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Nonprofit Radio for April 13, 2018: Remembering The Ice Bucket Challenge

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Barbara Newhouse: Remembering The Ice Bucket Challenge

Barbara Newhouse

It was the summer of 2014. The Ice Bucket Challenge captured the country’s attention for six weeks. When it was over, I captured an interview with Barbara Newhouse, CEO of ALS Association, the nonprofit that reaped over 2 million new donors giving $115 million in that time. To this day it’s recognized as the benchmark for campaign virality. Barbara shared the thrills and demands of ALS’s unprecedented spike in giving. Let’s look back. (Originally aired October 3, 2014)

 

 

 

 

 


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Hello and welcome to tony martignetti non-profit radio big non-profit ideas for the other ninety five percent on the aptly named host oh, i’m glad you’re with me. I’d be thrown into a naz mia if i got a whiff of the idea that you missed today’s show remembering the ice bucket challenge it was the summer of twenty fourteen the ice bucket challenge captured the country’s attention for six weeks. When it was over, i captured an interview with barbara newhouse, ceo of l s association the non-profit that reaped over two million new donors, giving one hundred fifteen million dollars in that time. To this day, it’s recognized as the benchmark for campaign virality barbara shell that shared the thrills and demands of alice’s unprecedented enormous spike in giving let’s look back that originally aired october third twenty fourteen tony stick to non-profit radio at ntc responsive by pursuing full service fund-raising data driven and technology enabled tony dahna slash pursuant to radio bye weinger cpas guiding you beyond the numbers regular cps dot com and tell us turning credit card processing into your passive revenue stream. Twenty dahna slash tony tello’s here is remembering the ice bucket challenge? It was recorded as a google plus hang out on air and in twenty fourteen livestreaming had more glitches that does now. So you’re going to hear occasional dropouts, but they’re short and you’re not gonna lose that much. Here it is. Hello and welcome to a special tony martignetti non-profit radio big non-profit ideas for the other ninety five percent i’m your aptly named host oh, i’m glad you’re with me. I would suffer the embarrassment of score pubic ginger vitus if i had to say the words you missed today’s show l s after ice bucket challenge a less association president and ceo barbara new houses with me this’s her she’s right now, she’s here, she’s going to share the thrills and demands of the ice bucket challenge how is the organization managing that huge spike in donors and dollars? What comes next? We’re on a google plus hang out on air and we very much want your questions. If you are at tony martignetti dot com, then use twitter and use the hashtag non-profit radio. If you’re on the chronicle of philanthropy, side used the comment section and if you’re on google plus usually discussion window. My thanks to the chronicle of philanthropy for letting us use their studio in washington, d c also to the chronicle’s web editor cody swain. Sir. He’s today’s, producer on the other side of the camp. But trust me, he’s here. Non-profit radio is sponsored by generosity. Siri’s they host multi charity five k runs and walks general city siri’s dot com i am very excited to welcome for a new house to the show. She has led the less association since june. You really stepped in it and it’s growing. She has held a senior leadership positions at alzheimer’s association, autism society and arthritis foundation a l s is that l s a dot or ge? And on twitter, they are at association. Welcome to the show. Well, thank you for having me time. What is next in your careers? It isn’t bea bea disease. You know? Everybody asks me, i’ll dahna friend, my career is grandchildren co-branded she was fired-up grandchildren i aspired to have have grandchildren, your children, a rare of your aspirations. Well, they’re not there either, obviously, but they’re aware they’re away and made them well aware yes, i do very much aware, because that’s, where i’m actually headed, will be retired, but hopefully okay, the association does research funds. Research also does care for patients and support for families and nations so let’s, make sure everybody understands what having a future. Amglobal traffic lateral sclerosis is a muscular euro disease, which actually impacts all of the muscles throughout the body. Sometimes it starts in the limbs, sometimes a little more rare, but it starts in the throat muscles, but eventually the disease will take over the entire body. A person who has a less will live anywhere from two to five on average, although some people do live longer. But for the most part, once your diagnosis usually two to five years and it will eventually encompass you, you’re breathing and you’re building tio it’s obvious. So it is fatal. It is fatal. The latest numbers from the i spoke to challenge what? What are those in terms of new donors and dollars raise? Well, as we wrapped up on the ice bucket challenge, we’re one hundred fifteen million and that was that is two point four million donors to your world and your total fund-raising in twenty thirteen wass what? Nineteen twenty thirteen at the national level, we raised around twenty one million. And at the chapter level, they raised another a three way. Okay, enormous spike and two point four million donors you difference can’t new donors him from came from a challenge, right? What? What was that like in i would like to. I’d like to feel the thrills and maybe even the fears early july, early august, mid august. What was that feeling? Let’s? Just let’s. Just put this in perspective to say that as a brand new person, you know, i was out in the field making my rounds to start meeting people. And toward the end of july, the variant of july actually, the first week of august, um, i wass in atlanta and, uh, carrie monk, uh, our chief communications officer had got me on the phone, and she said, well, you know, this thing has taken off a bit from massive that started in massachusetts with the ice bucket challenge, and i sad something to the effect, you know, we’ll probably pick up a couple of million, you know, if that kind of thing, you know, someone well, then i call and that week i actually was in atlanta and i was sick. So then that week and she said, oh, my gosh, she said, you’re being challenged all over. We’ve got to get you you gotta do is get you know, you gotta get your eyesight. I can’t wait till i come back notes we’ve got to get a dime and, you know, so that’s where you’re at that’s, where we’re going to do it and i’m sick and i have my swor through on dh yes, and then i got sicker, but on by the same at the same time it was just floating and you know you’re you are you are, like on your everyday wass are you kidding me? Andi just kept going, and with we kept saying to ourselves, be because literally all hands are on deck all across the country, in our chapters and at the national office and, you know, we’re like going all right, you handle this will have, you know, this personal handle, this were kept going on like that, and we also kept thinking, well, after this weekend, we’ll then what we found where that as it started to look like it was going to plateau, you’d get to the weekend, and of course, everybody would be getting together with their friends, and the next thing you know is it started going up you get and so i was like, okay, on dh. Finally, i said, teo said to carry and we were talking about it as a team and we all thought labor day would probably be then about the time that it would probably start to flood show and really that’s when it started to tell those kids got back to school and there are other things to focus on, it came to a less organically, which i love it was not at all that there is not it wasn’t planned, you know, communications playing marketing plan, still sufficient a stewardship plan? No, i did not walk in the door and say, today we’re going to do ice like a challenge that we’re going teo really up the awareness of a less and we’re going to really have the money. So you’re not leaving any less of you and sure you’re so marketable. Ao anywhere we’re taking a harpy your great look, but, you know, but there are different stories about how it came to a less, uh, can you consent? Do-it-yourself they’re three gentlemen with a less, uh, people rabies, pat quinn and tony center jia the three guys had been communicating with one another about how they could raise the level of awareness of ale us and in our discussions and so forth, they, uh, started in and seen somebody use an ice bucket on something else. That’s what they said. But, you know, what we really need to do is it’s sort of like the ice bucket because you know what? People get up in the morning and they splash water on their face. It gives him sort of a wake up moment, and the guys decided that they needed to be on wake up call of sorts. And so they really started it. But then it was the freddy’s family in massachusetts that then took it real because there really was for any charity. Yeah, the idea. I think matt lauer did it on television for someone for hospice care. Something originally was for any charity you were close to. Yeah, i mean, and and so these guys just took it to another level. But then it was really p praise and his family that they moved it to sort of the level of the viral nature of it, that it could go and it’s when all over the world? Yeah. George bush, derek jeter around with his retirement it’s? Uh, of course, it’s time for a break pursuant. The current paper is demystifying the donor journey. Three weeks ago i talked about this with taylor shanklin, vice president from pursuant you don’t need the paper, but think of a friend working for a non-profit someone who might like help with donor stewardship help keeping their donors so they don’t have to replace them each year an expensive time wasting thing. You got somebody in mind you have a picture of them, i see them, i see them to their holding something they’ve got a tablet and they’re scrolling through is that a take out menu? Is that their new printer manual no it’s demystifying the donor journey? They’ve got it because you sent it to them. Go to tony dahna slash pursuant radio send your friend there. Now back to remembering the ice bucket challenge with barbara newhouse, wei asked a bunch of weight listeners to give us questions in advance on got someone and again, if you’re viewing, please use twitter hashtag non-profit radio or use the comment section if you’re on the chronicle site or if you’re on google plus using discussion window on because we want it, we want your questions, so please participate with us. One of the questions came from fremery symbol, who is the show’s monthly prospect research contributor? What is a less doing to segment and cultivate the new growth in donorsearch new pool of donors so that you can identify metoo gift prospects and cultivated and stuart valiantly. So what we have done is, first of all, we are saying we segmented the new donors so that we knew who was out, what e-giving level on those people that have given ten thousand dollars or more, uh, are either receiving a call from me or from bill, though it who is our national board chair or from larry barnett, who chairs are development committee. So the three of us have split those out there who are actually calling each of those individuals with ten thousand or over get dawn to thank them for their contributions. The folks that have generously given below ten thousand, of course they’ve always see it. Really everybody received an acknowledgement the moment they’re give kayman acknowledgement went out, but then from our blue, this stuff there that was that mechanism didn’t need to. Be tweaked because of the volume. Well, we did have our site crash one one day, but it got back-up ready very quickly, but a cz the whole thing started to kick, i think, because of the way that it went, even though it seems like away very fast, everyone, we had enough time in there that we were able to tweak our messaging. And carrie monk, our chief marketing officer, um, mention territory couple tees here was also running the camp. I can caress here twenty four seven. I swear that woman was talking, but we kept tweaking the messages so that we were ready to go and get those acknowledgements out because we didn’t want anybody to wait to be thanked s o that’s happened. Now, it’s a matter of doing the cultivating of the donors that were ten thousand over then there is another cultivation level that involves some personalized letters from myself. Teo, the next level down of donors that would probably between the five and ten thousand are actually it’s. The thousand dollars up. And i was ten thousand. Yeah, because doing another’s personal letters from me and then below that we’ve got our team. Of folks along with our chapter network, we’re all working to make sure that all of the donors are, you know, thanked those we also offered on online you have the ability, teo, decide how much information wanted to continue to have from the association. S o we’re honoring those wishes, some of them wanted to be connected with chapters, someone would want to be handled, you know, just be deal with research and so in at the national level. So all of that’s going on, we have, man, let me ask what, uh, how many people are roughly what proportion didn’t want any more information? See, i would say that it’s about about fifty percent said one time you have that’s it on dh, then the other fifty percent are taking a look at exactly what level of the multi levels yeah, yeah, that sort of goes to the sle activism question, which you don’t get to, but so roughly fifty percent that’s still one point, two million new right donors interested in some level of engagement, right? Okay, so but then what we’re also doing is we’re meeting with, uh, a couple of different consultants on some of the strategies that they would think would be appropriate in terms of continuing to move these donors alone on and certainly our board is taking a big interest in working on that, too some involvement as well. So we’re looking at all those strategies and are determining how we best go forth with our new dollars, and we’re working with our chapters to do that as well. Yeah, the chapters were important and support for them and well, on the plus because, well, the reason that that becomes extremely important is because, you know, in a federated environment, you tend to knock heads with your national organization. We don’t want to do that with these new daughters, so what we do, what we want to do is create a strategy that will allow us to collaborate on together with our chapters on the stewardship, the cultivation and even the next task. And what is that strategy looks like you do, you know, we’re still defining that’s still under under wraps in terms of how we’re defining that, you know, right now t be boldly honest, we’re at the point where i’ve got folks working out strategies for how we’re gonna deal with the new donors, but i have a large part of our team working to prepare for our necks are board meeting in october on taking all the recommendations that we’ve heard from across the country on how to best use these noodles, ours and that’s what we’re working, we’ll get there was just a press release thiss week yesterday, i think, uh, do you foresee or have your dunaj our wealth screening because of the one point, two million or or some such that’s there the subset of obviously a thousand dollars in up? We’re working on those wells screenings just it takes a lot of time to get all this stuff down so coarse, and we’re trying to do it. We’re trying to do it as quickly as we can so that we can take advantage of opportunities while at the same time not hiring a bunch of new staff because we know that way, you know, that we would be that that would not be viewed well by many if we’re hiring invention used so and plus there’s future years that this unprecedented growth is not right there’s, not anomaly, could be sustained exactly that would yeah, that that would be things difficult for future years. Um, let’s, talk a little about the any questions korea i’m talking about that always staff knew of one question from knightley who says there’s been some discussion after the challenge ended about how much of the donation will go to research versus operational expenses, which you address a little bit. You share what the breakdown is for them. They don’t have the breakdown yet. I can tell you this a significant percentage of the dollars we’ll go to research, but i can’t give you the breakdown yet. How much is going to research? How much to care services, how much the public policy? And i would say, when you look at that piece it’s going to be how much is mission, how much is going to impact mission on? We don’t have that told percentage, et we know is significant on the research front, we’re still trying to sort through the other recommendations. Um, but it’s, you know, it’s not our intention to take and turn our organization into a top heavy organization because of these dollars that would not that is not at all where we’re headed, we want to use these dollars, teo, find an effective treatment and ultimately a cure. Oppcoll and there was just the press release yesterday. Yes, that you’re spending over twenty one million dollars twenty one two twenty two million dollars on one and again, that is looking at the system of mission impact. So if we start with the patient, the patient or the person with a last living with a less usually has seen by one of the less clinics oh, our centers, and so we announced yesterday, because what they learn in those centers then spends off as to what’s happening with clinical trials and drug therapies as well as other research. So were we announced yesterday that we would be spending on forty three, that each of the forty three centers will be receiving twenty five thousand dollars each, which is on increased from twelve thousand five hundred? So then if you look at it in that system and you go from there, then we know that we’ve got several research projects that we’re looking at the city of new york genome center, where they’re looking at a pipeline on a less to study genes there, secondly, is a project called project mind, which is actually working with global researchers on gene sequencing. Third is a neural collaborative out eyes just on the west coast involving see your sign, i and some other of the researchers there, and that we’ll be looking at the drug therapy pipeline on dh. The fourth one is a bio therapy study. That’s going on at gh on de eso again. What we did is we chose those for research projects because it tied into what we were hearing from the community, the less community. And they were for projects that allowed us to leverage down with some with a couple of donors who wished to remain anonymous. But who’s sad if you are a way, will match this so it’s going to make the dollars from the ice like a challenge go further so that’s that he’s, then another thing that its seeds and influences everything that we do is research particularly on the drug therapy pipeline is certainly fda. And so we are. It was only one drug now, right? Right there’s. Only one run for your strength and right and it’s. Not well anyway, there’s. Only one drop, but what? We know is that even with the drug in the pipeline, it can get caught up in a while in fda processes, so modelling after what we saw with another organization who did something similar we have, we’re now creating an fda consortium so that we can do everything we can to help prepare to help move that movement through more quickly through the fda process. And so again, that’s out of the advocacy in public policy arena that we’re doing that. So essentially, what that does is tie our system together. On it comes between twenty one two, twenty two million, and that will take take it from there when we go meet with our board in october. A question that came from angela see worth on the facebook page, how much will you reserve to invest in development and marketing over the next five years? Teo nasco i that’s a good question. I wish i had the answer to that today, actually, just before we came over here, we’ve met with our pr firm that we work with. Wait, we were talking about the strategies first of all, even before we get there, let us in the booth. In the back door, what we’ve gotta do is we’ve got to define what the doomed or for the ayla’s association iss you know, if you if you if you’re on a budget nationally of roughly twenty one million and you were spending roughly seven million of that and research now, we’ve got to take a look at what’s our new nor going to be so we’ve got to figure out some of these other parts in terms of looking at our door on dh then it’s a matter of alright, what investments are we going? If our new nor goes from twenty one billion to around forty million a year, what are the investments we need to make of the development side to keep to be able to keep that level and what we need to do on the marketing? The aware decide to continue on concern for a loss and awareness of the ayla’s association, so is looking at those kinds of things, and right now we’re we’re studying and we’re taking a look at a lot of different models so that as the decision making process moves forward and we develop with that new nor looks like that we can then determine what we’re going to need involved development and marketing just sustainers don’t do an advisory panel excuse me that you’ve put together. I have to try to figure out how these different needs khun should be should be a man now, now that that’s not what that advisory panel i have a panel of a less advisors who has been working and talking with me around the recommendations as people with a less half a minute on the mission and passed on the sign that i just referring, tio, we have a couple, a couple of different consultants that we’re using toe work with us and also, of course, our board is very much involved in this piece. What is the ellis in down? Is there a way we don’t have an endowment? And we’re not going to happen now, you know, you don’t that’s what i was gonna ask you here for support. Yeah, you start with what you have in the way we don’t have an endowment, and i don’t foresee us having an endowment because i believe and i firmly believe this that is a voluntary health agency our job is to solve the issue we need to solve at. Be done with it, and endowments have their place. But i don’t happen. It’s. My personal belief that it doesn’t belong in the disease space. When you’re working hard for yourself out of business, yeah. Another question came from any sample ward, who is our monthly social media contributor, and she’s, also the ceo of and ten the non-profit technology network and so she’s getting to the chapter chapter support, knowing that donations weren’t made on ly to the national palace knowledge and systems readiness, maybe different chapter chapter zoho chapters of their capabilities, but they still need to be able to report and tell stories and cultivate donors. So what what’s in place or what would be in place to help support the local chapter buy-in insurance follow-up of their donors, communications and detaining? Well, actually, you know, actually, i think our chapter networkers more sophisticated than what some people might think, but, you know, they’re doing a good job of following up with the donors that came directly to them out of the ice bucket challenge. Carrie and her team have been great in terms of providing additional support in terms of press releases f ake use things that they could use on the local front, teo answer questions to respond to media needs, but the chapters you know, we’ve we’ve had regular contact with the chapters all the way throughout this, so way sort of looked at it as a family. We’re in this together on dh, so i don’t believe that we’ve left any of our chapters hanging in not being able to respond. Teo, even me, it is in their constituents wanted enormous growth. You feel there? Yeah, you know, you’re all looking at it together. And so right now, why were also in the middle of walk season and we’ve seen tremendous lift in our chapters walks through out the country thiss was the ice bucket challenge? I couldn’t have been a better precursor. Teo teo, the walks that have come subsequently on dh so it’s it’s in all of that, they’re working, we’re working with them, they’re working with us on how they will handle the lift that they’ve each scene. Now we do know that some of their donors we’ll also want money to go to research, so they’re trying to determine and work that all out with us or working in tandem with us so that we make sure those dollars go eyes the donor intended that growth in the walks is is important to recognize because it does show that there’s there’s carry over, i’ll absolutely. You have one point, two million people the half who said i’d like to be engaged, but now you’ve seen enormous growth in actual activity and their own individual fund-raising around there walk. All right, i had the pleasure of attending our pittsburgh walk, which was taking place sort of like, right after labor day. That’s what you’re thinking, you know, while its part to their great ilsen anyway wedding suit just time itself, the i forget what wedding soup is them? So it’s got the remember it, it’s got mean, remember hearing that rice balls or something? Well, sausage balls, i think it’s a sausage because i got a little quality wedding soup i thought was right. Ok, well, maybe it could be i don’t know and just tasted good eso. Anyway, while i was there to attend the walk their walk a year ago it was sixteen hundred people there walk this year was over three thousand people great. So i mean it’s just and that that’s just one example of all across the country the way it’s been, we need to take a break, wittner cps they’ve got an archive wigan or that i entreat you. To check out, prepare your nine ninety for success. If you’re one of the fortunate organizations that is enraptured to complete the full nine ninety not that pusillanimous easy or that end postcard even then listen to wagner’s. Wigan are listen to the wagon are that includes common mistakes and most damaging mistakes you want to avoid those and how to use your nine ninety is a marketing tool. We talked about that on this show. That was that was august seventh twenty fifteen with heat coach doom. So check out the wagon are goto wagner cpas quick resource is than wagon ours now time for tony’s take two not proper radio at the non-profit technology conference this very moment as you are listening right now, not when i recorded right now as you’re listening friday the thirteenth on the exhibit floor booth three oh five recording tons of interviews for future shows so if you were listening live right now, you’re probably not their use hashtag ntc to begin on what’s happening for the whole conference i’ll be tweeting as much as i can in between the interviews and if you want, check out the video, of course, that is that tony martignetti dot com introducing what i’m doing there live? Listen love podcast pleasantries and affiliate affections it all goes out the live love goes out, especially on ntcdinosaur so if you’re listening live, the love goes out to you. If you’re listening, buy a podcast one of are over twelve thousand listeners through that method, then the pleasantries go out to you, and if you are listening via analog am and fm as it’s ah used to be known, then affections go out to you, our am and fm listeners. That is tony stick to and the live listener love now returned to remembering that ice bucket challenge gotomeeting many year questions from the web and you are sources way have two questions last two freeways, and both are about the big money donors. I think most people associate social media with a lot of small donations. They’re both one of you know what percentage of the overall better had fit into that large ten thousand plus group. That was a smaller percentage. You don’t think about it if we can, if we can divide these up to call, you know, i would say we’re probably each. Making about i’m going to guess that, you know, somewhere around it’s, the average gift was forty five dollars carries holding up a little bit. So if he ever did, was forgive make-a-wish bourelly everybody with a camera change sheets the cue cards to come up. But i t answer the question about the large donors. We probably had about one hundred very large donors the ten thousand above. Yeah, yeah, the question or that was the same that’s for you, let’s. Go a little bit to the some of the critics, but this is still activism. Marcis ism. What do you mean? I think the numbers bear out, but i think people want to hear your response. I get asked about this. And i’ll just tell you, i think that any other non-profit who was positioned in where we were at the same time that we were would have done the same thing. You know, it’s way sent out. Exactly. Excuse me. One email to sixty thousand of our dollars, as always sent. And then from there, you know, again, we have no idea what was what this would do on. And you know, i yeah, i think what? We’ve done is a good thing to raise the awareness, the concern for ayla’s as a disease raise the awareness level of, you know, not just our organization, there are a lot of ale esports organizations that support ellis and one way or another, eso you know, i just i don’t know that i for anybody who could sit and be very polly anna and say that they would they would have just shunned all the awareness and they were shunned the money, i don’t believe it on then some of the criticism is that there’s too much awareness now, and that will take money away from uther i don’t think that’s a worthy causes, and you know what? I didn’t tell musical causes donors are smarter than that. People are going to support what they want to support, uh, and if they got into the ice bucket challenge because they kept feeling like somebody kept challenging them, they would have made a small donation the average of forty five dollars, and that would have been it. So, you know, i think that i just think that the donor population is smarter than you that they’re going to give what? They want to give, too, and i am not objective, even though we’re in the chronicle of philanthropy offices, which is a major journalistic institution. I posted a video on my site that said, you know, congratulations and let’s, leave us alone. Could we get off that i called just they’re back, let’s, see how they handle it? Maybe they’ll do very well may be it’ll mess something’s up, you know, but it let’s, let’s give you the chance, so i’m not, you know, but i think we should raise the critics voices, uh, but i’m not objective. I thinkit’s man, is just it’s. Incredible, right? And i, you know, my goodness, i think the other thing, teo just will say this. I think some of that played in something things are played into. Why did this take off the way that it did not only did it start organically, but i also think that the other thing is if you think about what was going on during the month of oddest in our country and in the world, i honestly believe people were looking for something that they could hang some hold onto, remind us when there’s the ukraine way had all this stuff going on with the ukraine hole, it was starting to come about least, we’re starting to see hostages being beheaded and with the whole isis thing, so i think that there was a lot going on and sometimes people he sometimes just need a break from other things that are happening as well. So, you know, i don’t want to see any of that stuff going on in our world when it was happening. I think that may have played a bit into, uh, why? Why did the media pay so much attention to it? Why don’t other people pay so much attention to i think it had to do that. We’re looking for something else to report besides just always reporting such bad news, then there was the stars to celebrities did george bush s o that helps that helps feed the momentum, of course, and, you know, so we follow-up we’re following up with we’re following up with high potential donors and, uh, and celebrities to find out what was the reason i mean, and we have found some connections to a less in front in from some of them as having no sabelo so so, you know, in talking with a few of the celebrities and because they’re not ready to have to make some pretty cool course, right? Exactly, you know, we took your calls and and and actually they wanted to talk about a less because they had a family member, uh, who had a less and people that were close to them and e remember, our celebrities actually do have a life outside of being a celebrity and that they have family members, they have friends, and they actually grew up from being little people, just like we did on dh so they have connections to diseases and analysis is no different korean here, anywhere, questions? Yeah, well, you have one. Okay, the question is under st verbatim here from a diversified bottle. Are there any plans for a lesson? Tate quote. Ownership of the ice bucket challenge. Um, well, as everybody knows, we will do this stuff during high spoken challenge you thought well, and we did it for the right reasons, even though it was this definitely pulled back because what was the misstep was as we attempted to trademark ice bucket challenge, we had filled out an application are reason for that, though i had to do with the fact that we were learning from families who were involved with the l s that there were some people out developing websites to scam why away from the airless community for their own and so way got doing that when they turn out to be well, mister, that flash from from people indicating that we were greedy and everything else we finally just said, look, we get it going, and it made a decision we should’ve grayce now, as far as owning the ice bucket challenge, i that’s gonna be left of people it’s gonna be, i don’t know started organically. Yeah, um, yeah, so we’ll see what happens. I don’t know about trying to replicate a mean like that. I think that i’ve been there’s office phony, and i’m not even sure it’s feasible there’s. Discussion and we’ll see where that goes, but, you know, again way, pay tribute to the roots or yeah, i love i love that part of it, too. Any questions, twitter, twitter if you’re on twitter or if you’re tony martignetti dot com watching, then use twitter. Just submit a question and use the hashtag non-profit radio if you’re on the chronicle site, used the comment section and if you are on the google plus page used the discussion windows coating anything you know we have one more and this is a very practical graft versus from this comes from the crime site, and this comes from emily so she’s, a great writer u c irvine you noticed on the site that the call for research abstracts hasn’t been updated for twenty fifteen yet they have a lot of researchers were curious to know when the call proposals to be up do you have to know when you will have a call for abstracts for the upcoming year? You know, i dr bruin’s lucy bruins, who is our chief scientist? She and iron and right now we’re in the throes of the plan that’s being developed to go to the board, i think their details to be worked out. Uh, you remember folks? I started in june one. So i’m not even sure what normal timing is. Carrie, do you know what terrible timing is? I mean, sure, what normal tightening is for with those abstracts have been called for, uh, but what i will say is i would be looking for some announcements, uh, first of november, about how the research dollars are planning to be allocated. Andi would come back to that is, i think, that’s important point, how their plan to the allocated. And then i think lucy, doctor, dr bones will be break releasing tight lines. After that. I want to come back to the word allocated wake yeah, laden water break. We have water, and we’re not going to try to sneak it in. There’s no, there’s, no, no secrets here and there’s, no ice here. We’re not pouring it on another. Yes, i think. Oppcoll thank you, thank you for indulging. So anyway, the word allocated is important as a postal lorts spent, uh, i’ve had some people who, you know, there are a lot of people because of the devastating nature veil less urgent in six who would like us to take all the money and just throw it at the research community? Well, the reality is this is emily knows when you’re applying for a grant, you don’t want to think that you’re funding sources going without money before your research is done. So when we allocate dollars will be allocating dollars so that if how how are we going to look at it is if we have a researcher that presents a grant and and it had to be a grand that’s uh uh three million dollar grant it’s likely going to be a three million dollar grant over three years? So we’re allocating dollars so that we will be able to hold dollar or a research grant so that we know that it will be able to be spent over the course of the life of the grant s o that weren’t allocators opposed to spend is important and the other word. That’s. Important. His sustainability and it’s, not about sustainability. Uh, my job carries job, that kind of thing. I’m concerned about sustainability of the funds that are allocated for various research projects or projects that have a lifetime of over one year, on and that’s. Why we are doing the kind of very thoughtful planning that we’re doing so that we don’t find ourselves in a position of being in a new norm, perhaps, of ah, budget of forty million. And then within two years time having that new norm go back down to twenty one. Two year shift to the board a little bit bored always, uh, there was a hot topic for non-profits of all sizes you did talk a little about the fact that they’re very involved in the planning process. Uh, do you do you foresee an expansion of the board because of this at all? It’s, we’re going on the expanding the board. Uh, you know, we’ve got, you know, every year we have a certain number of people whose terms role and they were lost the board, i think probably what it’s done is it’s allowing us to look critically at some new key people to assess the level of involvement they want to have with our organization. Also, now that you’ve met some potential, don’t you remember search? So, yeah, we’re looking at all of that, but, uh, you know, we’re not going to go in and take our board of right now twenty three people attributed to a porter fifty, because that doesn’t make any sense. We got to take a break, tell us credit card payment processing the long tail of passive revenue for you think of those local companies that accept credit cards, who doesn’t, and especially if they’re already supporting you in some way encourage them to go watch the video at tony dahna, slash tony tello’s and figure out whether they would be willing tto switch to tell us, and you will get fifty percent of all the revenue from all those transactions. Tony, that i may slash tony tell us now back to barbara newhouse, could be anything from the web. Uh, one question from roger, who has what do you what do you think is the biggest challenge? Entertaining the one point two million donors who elected teo continue their when i say one point two million using the figure that is sort of well, that looking as across the board in the country, you know, we know that we know that we have a consistent just so i can say this consistent five hundred thousand new donors from the online stuff, looking at what we know what we’re learning from our chapters in terms of donors who want to be engaged and that’s how it gets that one point two million, just so clear. Thie all right, now, what was the question? Didn’t say what is the what is the biggest challenge to retaining those donors? These challenge to retaining the donors is making sure that we understand their expectations on and they were able to meet their expectations and engagement engagement, but that’s part of expectations if they’re expecting to be engaged of certain level, we’re going to make sure that we’re meeting that, but if they’re expecting really to hear from us just a couple times a year, that expectation we need to meet so it’s, it’s, it’s looking at the expectations and then rising to the level of the notation that they don’t have. Yeah, how has social media planning changed or social media activity change? Well, social media’s not stop twitter, facebook, all of those non stop it. So actually, we’ve got meetings on monday to really start taking a look at what our messaging strategy is going to be from this point going forward and what that looks like in the social media world is that stephanie who? Uh, stephanie isn’t tulani work-life to meet you? Yeah, stephanie should be sainted. I agree she should be saying saying, stephanie yeah, very several. Your outstanding e-giving getting me in touch with barbara working out the logistics. Thank you, stephanie, but she should be sainted because there’s, another person that worked truly twenty four seven, in fact, show that personal. Well, stephanie, doctor, as are our social media presence should be a person who sends cary. Yes, that’s what? My point? No. My point is, though, is carrie carrie was going to relieve stephanie. I’m gonna tell this funny story. She’s gonna relieve stephanie over what? I want to hear the backstory on her back. She says that she was gonna really stephanie one weekend in two hours into it she goes, i get a text or a phone call for carrie’s coz i don’t think i can’t take this anymore because it was just so intense. And stephanie has obviously just the right demeanor on handled it well handled it she’s a carrier. What was going on? What was going on then? Just answering a lot of questions on the volume. It was the volume that was crushing. You just people’s passions, their intensity there intently and are coming through. And i just you’re being responsive and respectful and just keeping up with e i think we learned i will also say this. I think we all learned a lot about human behavior during this period of time. Um, you know, if you want the back story that that story was good stuff took forty five minutes. All right, what did you learn about human behavior? Well, that your behavior is, to be honest with you, i found that people there were a lot of people on twitter and facebook that just were pretty rude and unkind in, you know, there’s a difference between being a critic and then being downright rude and offensive, how style? Because you were doing so well, some of that some of that because we weren’t just getting getting money in and putting it out the door, and, you know, some of it, you know, because we didn’t couldn’t have immediate answers to questions, you know, when you take an organization that is a small organization at twenty one million and the national budget, and then you add the chapters in it were probably up to fifty million or so you take an organization like that and dump what he coming here the way that it has, if you’re wise, you want to say that people were going to plan now, that would be the wisdom part of it that you would think is common sense. Well, i’ve learned his common sense is not common tio ever want and s o you know, i curies taken her shots, all accepting the shot, but i get, you know, i’ve had the luxury of being called all sorts of really on in-kind names from things that are just vile to things that just were so hurtful, and anybody who knows me knows that i have that i don’t process well and s so i went home and tears a few nights going, i don’t believe this, you know, you people would want to be nice there’s, a double side to social media and unlimited audience engagement, and you suffered something that part, but that was a small part. Yeah, it was a small part, but it was just those people become very vocal, even though their small numbers they’ve become very bold on social media because that’s their platform more questions, cody. Seven years e-giving your apple questions about four minutes left, okay, do you have questions? Yeah, these questions from mike do you think would have had more access to the potential donors that the challenge on facebook and twitter if you had managed the engagement on a platform and i soon by that he means a platform of your own? Ah that’s all that’s all speculation yeah, i’m not sure about that, you know, i’m not sure about that, but, you know, i think we’re engaged a lot with our donors, you know, somehow i e feel like i’m losing some of a message here because i don’t want you all to think that we’re not engaged with our donors, the new donors because we were very much engaged with them now, but if you’re asking for specific strategies on where we’re going to go and how we’re going to get there, i can’t give you that yet, waiting on coming back to take the weekend. Thank you. We’ll be looking on tuesday. Oh, yeah, you can report back to you. I mean, you know, zoho they’re dealing with enormous scale in or it was dumped on you within six weeks or so, right? And i’m brand new. I mean, i barely knew some of that i didn’t know my boardmember snakes when this all started barrel some of them, i still won’t meet for the first time. Face-to-face and thanks for doing this before not don’t want me to do thank you. Anything else from the web now? Okay, uh, just column is left. What is? Just since june it’s been what is it that you love about the work you’re doing? Oh, well, my favorite thing about the work that i’m doing are all the people that i meet. I want them to have a less, but they have enriched my life as i need individuals with a less and i have to admit this i’m a chapter girl, so i love the work. There are chapters d’oh, and i love getting out and seeing what they’re doing and being up right alongside them. I love going into our centers of excellence, seeing the good work that our research docks are doing there. So it’s, just i enjoy getting out among the people. I’m not very good, but i just have to sit in my office because i want number one it’s, always very busy, but i really like being out with people. Thirty eight chapters to support and be good to write. And they’re good to me. We’re wrapping up, uh, thank you for coming again. They r a l s a dot or ge, and on twitter, the they’re the a l s i. D is at association. Next week, dennis miller and strategic alignment. If you missed any part of today’s show, i beseech you, find it on tony martignetti dot com were supported by pursuing online tools for small and midsize non-profits data driven and technology enabled. Tony dahna slash pursuant radio. Well, you see, piela is guiding you beyond the numbers. Regular cps dot com and tell us credit card payment processing, your passive revenue stream. Tony dahna slash tony tell us our creative producers, claire meyerhoff. Sam liebowitz is the line producer, shows social media is by susan chavez, and our music is by scott stein. You with me next week for non-profit radio. Big non-profit ideas for the i’m third, ninety five percent go out and be great. You’re listening to the talking alternative network. Get in. E-giving cubine are you stuck in a rut? Negative thoughts, feelings and conversations got you down. Hi. I’m nor ing. Sometimes the potentially ater tune in every tuesday line to ten eastern time and listen for new ideas on my show. Beyond potential live life your way on talk radio dot n y c. Metoo are you feeling unhappy with your body, shape or size? Ever feel out of control with food? I’m elizabeth from nourish the soul, and on the show, you’ll uncover the route to these imbalances and discover a permanent solution. Toe having a healthy relationship to food and your body. Join us every thursday morning at eleven a, m eastern time on talk radio dot. Hey, all you crazy listeners looking to boost your business? Why not advertise on talking alternative with very reasonable rates? Interested simply email at info at talking alternative dot com are you into comics, movies and pop culture at large? What about music and tv, then you’re in for a treat. This is michael dole. Check your host on talking alternative dot com. I’ve been professionally writing comic books, screenplays and music articles from fifteen years. Catch my show secrets of the sire at its new prime time slot. Wednesdays, eight p m eastern time, and get the inside scoop on the pop culture universe you love to talk about. For more info, go to secrets of the sire dot com hyre. You’re listening to talking alternative network at www dot talking alternative dot com, now broadcasting twenty four hours a day. Are you a conscious co creator? Are you on a quest to raise your vibration and your consciousness? Um, sam liebowitz, your conscious consultant, and on my show, that conscious consultant, our awakening humanity, we will touch upon all these topics and more. Listen, live at our new time on thursdays at twelve noon eastern time. That’s, the conscious consultant, our awakening humanity, thursday’s twelve, noon on talk radio dot. Yeah, you’re listening to the talking alternative network.

Video: ALS After Ice Bucket Challenge

Last week on Nonprofit Radio I interviewed Barbara Newhouse, the ALS president and CEO.

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Don’t despair. Here it is. My takeaways are below.

Takeaways:

— Ice Bucket Challenge yielded $115 million and 2.4 million new donors

— roughly half the donors expressed interest in remaining engaged

— no spending and allocation plan until November

— there’s so much to tell, you really should watch the video

Next week on Nonprofit Radio:

Maria Semple, our monthly prospect research contributor and The Prospect Finder, returns to talk about finding in-kind gifts.

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Nonprofit Radio for October 3, 2014: ALS After Ice Bucket Challenge

Big Nonprofit Ideas for the Other 95%

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My Guest:

Barbara Newhouse: ALS After Ice Bucket Challenge

Barbara Newhouse

I’m excited to welcome ALS Association president & CEO Barbara Newhouse! She’ll share the thrills and demands of the Ice Bucket Challenge. How is the organization managing the huge spike in donors and dollars? What comes next? It’s a Google+ Hangout on Air and we’ll take your questions on Twitter – use hashtag #NonprofitRadio.

Watch below: 

Thanks to The Chronicle of Philanthropy for providing their studio and expertise!

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Top Trends. Sound Advice. Lively Conversation. You’re on the air and on target as I delve into the big issues facing your nonprofit—and your career. If you have big dreams but an average budget, tune in to Tony Martignetti Nonprofit Radio. I interview the best in the business on every topic from board relations, fundraising, social media and compliance, to technology, accounting, volunteer management, finance, marketing and beyond. Always with you in mind. Sign-up for show alerts! Sponsored by:

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Dahna hello and welcome to a special tony martignetti non-profit radio big non-profit ideas for the other ninety five percent. I’m your aptly named host oh, i’m glad you’re with me. I would suffer the embarrassment of score pubic ginger vitus if i had to say the words you missed today’s show l s after ice bucket challenge a less association president and ceo barbara new houses with me this’s her she’s right now, she’s here, she’s going to share the thrills and demands of the ice bucket challenge how is the organization managing that huge spike in donors and dollars? What comes next? We’re on a google plus hang out on air and we very much want your questions. If you are at tony martignetti dot com, then use twitter and use the hashtag non-profit radio if you’re on the chronicle of philanthropy, side used the comment section and if you’re on google plus usually discussion window my thanks to the chronicle of philanthropy for letting us use their studio in washington, d c also to the chronicle’s web editor cody swain, sir he’s today’s, producer on the other side of the camp but trust me, he’s here. Non-profit radio is sponsored by generosity. Siri’s they host multi charity five k runs and walks general city siri’s dot com. I am very excited to welcome for a new house to the show. She has led the less association since june. You really stepped in it. And it’s incredible. She has held a senior leadership positions at alzheimer’s association, autism society and arthritis foundation a l s is that a l s a dot or ge? And on twitter, they are at a less association. Welcome to the show. Well, thank you for having me time. What is next in your careers? It isn’t bea bea disease. You know? Everybody asks me. I’ll bring my career is grandchildren co-branded she was fired-up grandchildren. I aspired to have have grandchildren, your children a rare of your aspirations. Well, they’re not there, obviously, but they’re aware they’re away and made them well aware. Yes, i do very much aware, because that’s, where i’m actually headed, will be retired. But hopefully okay. The association does research funds. Research also does care for patients and support for families and nations. Uh, so let’s. Make sure everybody understands what having a future. Annual traffic lateral school roses is a muscular euro disease, which actually impacts all of the muscles throughout the body. Sometimes it starts in the limbs, sometimes a little more rare, but it starts in the throat muscles, but eventually the disease will take over the entire body. Ah, person who has a less will live anywhere from to find an average, although some people do live walker. But for the most part, once your diagnosis usually two to five years and it will eventually encompass you, you’re breathing and you’re building teo eat obvious. So it is fatal. It is fatal. The latest numbers from the ice bucket challenge what? What are those in terms of new donors and dollars raised? Well, as we wrapped up on the ice bucket challenge, we’re at one hundred fifteen million and that was that is two point four million donors to your world and your total fund-raising in twenty thirteen wass what? Nineteen twenty thirteen at the national level, we raised around twenty one million. And at the chapter level they raised another tronvig three way. Okay, enormous spike and two point four million donors you difference can’t new donors him from came from a challenge, right? What? What was that like in i would like to i’d like to feel the thrills and the fire and maybe even the fears early july, early august, mid august. What was that feeling? Let’s? Just let’s just put this in perspective to say that as a brand in person, you know, i was out in the field making my rounds to start meeting people and toward the end of july, at the very end of july action first week of august, um, i wass in atlanta and, uh, carrie monk, uh, our chief communications officer had got me on the phone, and she said, well, you know, this thing has taken off a bit from massive that started in massachusetts with the ice bucket challenge, and i sad something to the effect, you know, we’ll probably pick up a couple of million, you know, if that kind of thing, you know, someone well, then i call and that week i actually was in atlanta and i was sick, so then that week, and she said, oh, my gosh, she said, you’re being challenged all over. We’ve got to get you, you’ve got to do with, you know, we’ve got to get your eyesight can’t wait till i come back. Notes we’ve got to get a dime and, you know, so that’s where you’re at that’s, where we’re going to do it and i’m sick and i have my swor through and yes, and then i got sicker, but on by the same at the same time it was just voting and you know you’re you are you are like on your everyday wass are you kidding me? Andi just kept going, and we kept saying to ourselves, be because literally all hands are on deck all across the country and our chapters and at the national office and, you know, we’re like going, alright, you handle this will have, you know, this personal handle, this were kept going on like that, and we also kept thinking, well, after this weekend, we’ll then what we found where that as it started to look like it was going to plateau, you’d get to the weekend, and of course, everybody would be getting together with their friends. And the next thing you know is it started going up you get and so i was like, okay on dh finally, i said, teo said to carry and we were talking about it as a team and we all thought labor day would probably be then about the time that it would probably start to flood show and really that’s when it started to tell us, kids got back to school and there are other things to focus on, it came to a less organically, which i love it was not at all that there is not it wasn’t planned, you know, communications plan, marketing plan, still sufficient a stewardship plan? No, i did not walk in the door and say, today, we’re going to do i spoke a challenge that we’re going teo really up the awareness of a less and we’re going to really have the money. So you’re not leaving any less of you and sure you’re so marketable. Ao anywhere we’re taking a harpy your great look, but you’re not. But there are different stories about how it came to a less, uh, can you consider it so they’re three gentlemen with dallas i people rabies, quinn and tony center jia the three guys had been communicating with one another about how they could raise the level of awareness of a lawless and and your discussions and so forth, they, uh, started in and seeing somebody use an ice bucket on something else. That’s what they said. But you know, what we really need to do is it’s sort of like the ice bucket because you know what? People get up in the morning and they splash water on their face. It gives him sort of a wake up moment, and the guys decided that they needed to be on wake up call of sorts. And so they really started it. But then it was the freddy’s family of massachusetts that then took it real because there really was for any charity. Yeah. Do i think matt lauer did it on television for someone for hospice care. Something originally was for any charity you were close to. Yeah, i mean, and and so these guys just took it to another level. But then it was really p praising his family that they moved it to sort of the level of the viral nature of it, that it could go and it’s went all over the world. Yeah. George bush, derek jeter with his retirement it’s uh, of course, but you’re listening to the talking alternative network. This’s, the cook said, about way we’re hosting part of my french new york city guests come from all over the world, from mali to new caledonia. From paris to keep back. French is a common language. Yes, they all come from different cultures, background or countries, and it common desires to make new york they’re home. Listen to them. Share this story. Join us. Pardon my french new york city every monday from one to two p, m. Are you stuck in your business or career trying to take your business to the next level, and it keeps hitting a wall? This is sam liebowitz, the conscious consultant. I will help you get to the root cause of your abundance issues and help move you forward in your life. Call me now and let’s. Create the future you dream of. Two, one, two, seven, two, one, eight, one, eight, three, that’s to one to seven to one, eight one eight three. The conscious consultant helping conscious people. Be better business people. Dahna talking. Dahna oppcoll wei asked a bunch of wei asked listeners to give us questions in advance on got someone and again, if you’re viewing, please use twitter hashtag non-profit radio or use the comment section if you’re on the chronicle site or if you’re on google plus using discussion window on because we want it, we want your questions, so please participate with us. One of the questions came from fremery symbol, who is the show’s monthly prospect research contributor? What is a less doing to segment and cultivate the new growth in donorsearch new pool donors so that you can identify? Did you give prospects and cultivated and stuart eventually? So what we have done is, first of all, we are saying we segmented the new donors so that we knew who was out, what e-giving level on those people that have given ten thousand dollars or more, uh, are either receiving a call from me or from bill, though it who is our national board chair, or from larry barnett, who chairs are development committee. So the three of us have split those out there who are actually calling each of those individuals with ten thousand are over. You don’t. Have to thank them for their contributions. The folks that have generously given below ten thousand ofcourse they’ve already see it’s really? Everybody received an acknowledgement the moment they’re give kayman acknowledgement went out, but then from the hour blew the stuff there that was that mechanism didn’t need to be tweaked because of the volume. Well, we did have our site crash one one day but it got back-up ready very quickly, but a cz the whole thing started to kick, i think, because of the way that it went, even though it seems like away very fast, everyone, we had enough time in there that we were able to tweak our messaging and carry monk, our chief marketing officer mentioned character or a couple of teachers here was also running the camp. I can caress here twenty four seven. I swear that woman was talking, but we kept tweaking the messages so that we were ready to go and get those acknowledgements out because we didn’t want anybody to wait to be there. S o that’s happened now, it’s a matter of doing the cultivating of the donors that were ten thousand over then there is another cultivation. Level that involves some personalized letters from myself. Teo, the next level down of donors that would probably between the five and ten thousand are actually it’s the thousand dollars up. And i was ten thousand. Yeah, because with another’s personal letters from me and then below that we’ve got our team of folks along with our chapter network, we’re all working to make sure that all of the donors are, you know, thank those we also offered on online. You have the ability, teo, decide how much information wanted to continue to have from the association. S o we’re honoring those wishes. Some of them wanted to be connected with chapters, someone would want to be handled, you know, just be deal with research and so being at the national level, so all of that’s going on, we have, man, let me ask what, uh, how many people are roughly what proportion didn’t want any more information? Let see, i would say that it’s about about fifty percent. So one time you that’s it on dh, then the other fifty percent are taking a look at exactly what level of the multi levels. Yeah, yeah, that sort of goes. To this school activism question, which you don’t get to, but so roughly fifty percent that’s still one point, two million new right donors interested in some level of engagement, right? Okay, so but then what we’re also doing is we’re meeting with, uh, a couple of different consultants on some of the strategies that they would think would be appropriate in terms of continuing to move these donors along on, and certainly our board is taking a big interest in working on that, too, some involvement as well. So we’re looking at all those strategies and are determining how we best go forth with our new dollars, and we’re working with our chapters to do that as well. Yeah, the chapters were important and support for them and well, on the plus because, well, the reason that that becomes extremely important is because, you know, in a federated environment, you tend to knock heads with your national organization. We don’t want to do that with these new daughters, so what we do, what we want to do is create a strategy that will allow us to collaborate on together with our chapters on the stewardship, the cultivation and even the next task, and what is that strange book like you do? You know we’re still defining that’s still under under wraps in terms of how we’re defining you know, right now t be boldly honest, we’re at the point where i’ve got folks working out strategies for how we’re gonna deal with the new donors, but i have a large part of our team working to prepare for our necks are board meeting in october on taking all the recommendations that we’ve heard from across the country on how to best use these new dollars and that’s what we’re working, we’ll get there was just a press release thiss week yesterday, uh, do you foresee or have your done our wealth screening because of the one point, two million or or some sort of sense there the subset of obviously thousand dollars and up, we’re working on those wells strings just it takes a lot of time to get all this stuff down so coarse, and we’re trying to do it. We’re trying to do it as quickly as we can so that we can take advantage of opportunities while at the same time not hiring a bunch of new staff, because we know that way, you know, that we would be that that would not be viewed well by many if we’re hiring invention used so and the clusters future years that this unprecedented growth is not right. There’s, not anomaly, could be sustained, so that would yeah, that would be things difficult for future years. Um, let’s, talk a little about the any questions could be talking about that always called staff knew of one question from knightley who says there’s been some discussion after the challenge ended about how much of the donation will go to research versus operational expenses. If you dressed a little bit, you share what the breakdown is for them. They don’t have the breakdown yet. I can tell you this a significant percentage of the dollars we’ll go to research, but i can’t give you the breakdown of how much is going to research, how much to care services, how much the public policy and i would say when you look at that piece it’s going to be how much is mission? How much is going to impact mission on? We don’t have that told for city jet we know is significant on the research front, we’re still trying to sort through the other recommendations, but it’s, you know, it’s not our intention to take and turn our organization into a top heavy organization because of these dollars that would not that is not at all where we’re headed. We want to use these dollars, teo, find an effective treatment and ultimately a cure. And there was just the press release yesterday. Yes, that you’re spending over twenty one million dollars twenty one two twenty two million dollars on one and again that is looking at the system of mission impact. So if we start with the patient, the patient or the person with a less living with a less usually has seen by one of the less clinics oh, our centers, and so we announced yesterday, because what they learn in those centers then spends off as to what’s happening with clinical trials and drug therapies as well as other research. So where we announced yesterday that we would be spending on forty three, that each of the forty three centers will be receiving twenty five thousand dollars each, which is on increased from twelve thousand five hundred so then if you look at it in that system and you go from there, then we know that we’ve got several research projects that we’re looking at the city of new york genome center, where they’re looking at a pipeline on a less to study genes there. Secondly, is a project called project mind, which is actually working with global researchers on gene sequencing third is a neural collaborative out eyes just on the west coast involving see your sign, i and some other of the researchers there and that we’ll be looking at the drug therapy pipeline. Andi the fourth one is, um ah, bio therapy study that’s going on at n g h on es o again, what we did is we chose those four research projects because it tied into what we were hearing from the community. Yeah, les community and they were for projects that allowed us to leverage down with some with a couple of donors who wished to remain anonymous but who’s sad if you are all way, will match this so it’s going to make the dollars from the ice like a challenge go further so that’s that he’s, then another thing that its seeds and influences. Everything that we do with research, particularly on the drug therapy pipeline, is certainly fda. And so we are only one drug now, right? Right there’s only one friend for illustrating and it’s not well, anyway, there’s only one drop, but what we know is that even with the drug and the pipeline, it can get caught up in a while in fda processes. So modelling after what we saw with another organization who did something similar way, we’re now creating an fda consortium so that we can do everything we can to help prepare to help move that movement through more quickly through the fda process. And so again, that’s out of the advocacy in public policy arena that we’re doing that. So essentially, what that does is tie our system together. On it comes between twenty one two, twenty two million, and that will take take it from there. When we go meet with our board in october. A question that came from angela. See worth on the facebook page, how much will you reserve to invest in development and marketing over the next five years? Teo nasco i that’s a good question i wish. I had the answer to that today, actually, just before we came over here, we’ve met with our, uh, pr firm that we work with. Wait, we were talking about the strategies first of all, even before we get there, let ilsen move isn’t the one the backdoor, what we’ve gotta dio is we’ve got to define what the doomed or for the a l s association? Yes, you know, if you if you if you’re on a budget nationally of roughly twenty one million and you were spending roughly seven million of that and research now, we’ve got to take a look at what’s our new nor going to be so we’ve got to figure out some of these other parts in terms of looking at our door on dh, then it’s a matter of alright, what investments are we going if our new nor goes from twenty one billion to around forty million a year, what are the investments we need to make of the development side to keep to be able to keep that level and what we need to do on the marketing, the aware decide to continue on concern for a loss and awareness of the ayla’s association so is looking at those kinds of things, and right now we’re studying and we’re taking a look at a lot of different models so that as the decision making process moves forward and we develop with that new nor looks like that, we can then determine what we’re going to need in both development and marketing just sustainers don’t do an advisory panel excuse me that you’ve put together, i have to try to figure out how these different needs khun should be should be a man now, now that that’s not what that advisory panel i have a panel of a less advisors who has been working and talking with me around the recommendations as people with a less have you passed on the sign that i just referring, tio, we have a couple, a couple of different consultants that we’re using toe work with us and also, of course, our board is very much involved in this piece. What is the inn down? Is there a way we don’t have any endowment? And we’re not going to happen now, you know, you don’t that’s what i was gonna ask you, dear, for small start. With what you have in the way, we don’t have an endowment. And i don’t foresee us having an endowment because i believe, and i firmly believe this. That is a voluntary health agency. Our job is to solve the issue we need to solve at be done with it, and endowments have their place. But i don’t happen. It’s. My personal belief that it doesn’t belong in the disease face when you’re working hard to put yourself out of business. Kapin another question came from any sample ward, who is our monthly social media contributor, and she’s, also the ceo of and ten the non-profit technology network and so she’s getting to the chapter chapter support, knowing that donations weren’t made on ly to the national palace knowledge and systems readiness, maybe different. Chapter chapter zoho chapters have different capabilities, but they still need to be able to report and tell stories and cultivate donors. So what what’s in place or what would be in place to help support the local chapter in insurance follow-up with their donors, communications and detaining? Well, actually, you know, actually, i think our chapter networkers more sophisticated than what some people might think, but, you know, they’re doing a good job of following up with the donors that came directly to them out of the ice bucket challenge. Carrie and her team have been great in terms of providing additional support in terms of press releases f ake use things that they could use on the local front, teo answer questions to respond to media needs, but the chapters you know, we’ve we’ve had regular contact with the chapters all the way throughout this, so way sort of looked at it as a family. We’re in this together on dh, so i don’t believe that we’ve left any of our chapters hanging it now being able to respond, teo, even me, it is in their constituents with enormous growth. You feel there? Yeah, you know, we’re all looking at it together. And so right now, why were also in the middle of walk season and we’ve seen tremendous lift in our chapters walks through out the country thiss was the ice bucket challenge? I couldn’t have been a better precursor, teo teo, the walks that have come subsequently on dh so it’s it’s in all of that, they’re working, we’re working with them, they’re working with us on how they will handle the lift that they’ve each scene. Now we do know that some of their donors we’ll also want money to go to research, so they’re trying to determine and work that all out with us or working in tandem with us so that we make sure those dollars go a cz the donor intended that growth in the walks is is important to recognize because it does show that there’s there’s carry over. I’ll absolutely not. You have one point, two million people the half who say they like to be engaged, but now you’ve seen enormous growth in actual activity and their own individual fund-raising around, they’re walking right? I had the pleasure of attending our pittsburgh walk, which was taking place sort of like, right after labor day. I want to cry, you know, while expert to their great awesome anyway wedding suit. Just time for the i forget what wedding soup is them? It’s got the remember it, it’s got mean, remember hearing that rice balls or something? Well, sausage balls, i think it’s a sausage because i’ve got a low quality winning soup i thought was right. Ok, well, maybe it could be i don’t know her and just tasted good eso. Anyway, while i was there to attend the walk there walk a year ago, it was sixteen hundred people. Their work this year was over three thousand people great, so i mean it’s just and that that’s just one example of all across the country the way it’s been gotomeeting many year questions from the web and you are sources way have two questions last nufer ways. And both are about the big money donors. I think most people associate social media with a lot of small donations. They’re both one of you know what percentage of the overall better had fit into that large ten thousand plus group. That was a smaller percentage. You don’t think about it if we can, if we can divide these up to call, uh, you know, i would say we’re probably each making about i’m going to guess that, you know, somewhere around it’s, the average gift was forty five dollars carries holding up a little bit. So if he ever did, was forgive make-a-wish bourelly everybody with a camera change sheets, the cue cards to come up. But i t answer the question about the large donors. We probably had about one hundred very large donors the ten thousand above. Yeah, yeah, the question that was saying that’s for you. Okay, let’s go a little bit to the the critics that this is still activism. Marcis ism. What do you mean? I think the numbers bear out, but i think people interested in hearing your responsible i get asked about this and i’ll just tell you, i think that any other non-profit who was positioned in where we were at the same time that we were would have done the same thing, you know, it’s way sent out exactly scuse me one email to sixty thousand of our dollars, as always sent, and then from there, you know, again, we have no idea what was what this would do on and, you know, i yeah, i think what we’ve done is a good thing to raise the awareness, the concern for ayla’s as a disease raise the awareness level of, you know, not just our organization, there are a lot of ale esports organizations that support ellis and one way or another, eso you know, i just i don’t know that i for anybody who could sit and be very polly anna and say that they would they would have just shunned all the awareness and they were shunned the money, i don’t believe it on then some of the criticism is that there’s too much awareness now, and that will take money away from uther i don’t think that’s a worthy causes, and you know what? I didn’t tell musical causes. Donors are smarter than that people are. Going to support what they want to support. Uh, and if they got into the ice bucket challenge because they kept feeling like somebody kept challenging them, they would have been a small donation the average of forty five dollars, and that would have been it. So, you know, i think that i just think that the donor population is smarter than that. They’re going to give what they want to get to. And i am not objective. Even though we’re in their conical flandez be offices, which is a major journalistic institution. I posted a video on my site that said, you know, congratulations and let’s leave us alone. Conway here off. I called george there back let’s, see how they handle it. Maybe they’ll do very well may be it’ll mess something’s up, you know, but it let’s, let’s give you the chance, so i’m not, you know, but i think we should raise the critics voices. Uh, but i’m not objective. I thinkit’s man is just it’s. Incredible, right? And i you know, my goodness, i think the other thing teo just will say this. I think some of that played in something things are played into. Why did this take off the way that it did not only did it start organically, but i also think that the other thing is if you think about what was going on during the month of oddest in our country and in the world, i honestly believe people were looking for something that they could hang some hold on to remind us, um, there’s the ukraine way had all this stuff going on with the ukraine hey, hold it was starting to come about least, we’re starting to see hostages being beheaded and with the whole isis thing, so i think that there was a lot going on and sometimes people he sometimes just need a break from other things that are happening as well. So, you know, i don’t want to see any of that stuff going on in our world when it was happening. I think that that may have played a bit into, uh, why? Why did the media pay so much attention to it? Why did other people pay so much attention to i think it had to do that we’re looking for something else to report besides just always report such bad news. Then there was the stars to celebrities, didn’t george bush s o that helps that helps feed the momentum, of course. And, you know, so we follow-up we’re following up with we’re following up with high potential donors and, uh, and celebrities to find out what was the reason, i mean, and we have found some connections to a less in front in from some of them, as we have, you know? Sabelo so so, you know, in talking with a few of the celebrities and because they’re not ready to have to make some pretty cool course, right? Exactly, you know, we took your calls and and and actually they wanted to talk about a less because they had a family member, uh, who had a less and people that were close to that e remember, our celebrities actually do have a life outside of being a celebrity and that they have family members, they have friends, and they actually grew up from being little people, just like we did on dh so they have connections to diseases, and the analysis is no different korean here, anywhere, questions. You have one, okay. Um, question is understated. Forbade him here from a diversified fondle. Are there any plans for a lesson? Tate quote. Ownership of the ice bucket challenge. Um, well, as everybody knows, wait, did you mis stop during high spoke a challenge? You thought well, and we did it for the right reasons, even though it wasn’t this definitely pulled back because what was the misstep was as we attempted to trademark ice bucket challenge, we had filled out an application are reason for that, though i had to do with the fact that we were learning from families who were involved with a l s that there were some people out developing websites to scam, why away from the airless community for their own and so way of doing that when they turn out to be well, mister, the backlash from from people indicating that we were greedy and everything else we finally just said, look, we get good at it made a decision we should’ve made now as far as owning the ice bucket challenge, i know it’s gonna be left of people it’s gonna be, i don’t know started organically. Yeah, um, yeah, so we’ll see what happens. I don’t know about trying to replicate a mean like that. I think that i’ve been there’s office phony and not even sure it’s feasible there’s. Discussion and we’ll see where that goes, but, uh, you know, again way, pay tribute to the roots or yeah, i love i love that part of it, too. Any questions, twitter, twitter, if you’re on twitter or if you’re tony martignetti dot com watching, then use twitter. Just submit a question and use the hashtag non-profit radio if you’re on the chronicle site, used the comment section and if you are on the google plus page used the discussion windows coating everything you know we have one more and this is a very practical graft versus from this comes from the crime site, and this comes from emily so she’s, a great writer u c irvine you noticed on the site that the call for research abstracts hasn’t been updated for twenty fifteen yet they have a lot of researchers were curious to know when the call proposals to be up. Do you have to know when you will have a call for abstracts for the upcoming year? You know, i dr bruin’s lucy bruins, who is our chief scientist? She and iron and right now we’re in the throes of the plan that’s being developed to go to the board, i think their details to be worked out. Uh, you remember folks? I started in june one, so i’m not even sure what normal timing is. Carrie, do you know what terrible timing is? I’m not sure what normal tightening is for with those abstracts have been called for, uh, but what i will say is i would be looking for some announcements around the first of november about how the research dollars are planning to be allocated. Andi would come back to that is, i think, that’s important point, how their plan to the allocated. And then i think lucy, doctor, dr bones will be break releasing tight lines after that. Bob, i want to come back to the word allocated way. Yeah, laden water break. We have water and we’re not going to try to sneak it in. There’s no, there’s, no, no secrets here. And there’s, no ice here. We’re not pouring it on another. Yes, i think. Oppcoll thank you, thank you for indulging. So anyway, the word allocated is important as opposed to edward spent, uh, i’ve had some people who, you know, there are a lot of people because of the devastating nature veil less urgent in six who would like us to take all the money and just throw it at the research community? Well, the reality is this is emily knows when you’re applying for a grant, you don’t want to think that you’re funding sources going without money before your research is done. So when we allocate dollars will be allocating dollars so that if how how are we going to look at it is if we have a researcher that presents a grant, okay? And you want to be a grand that’s uh, three million dollars grant it’s likely going to be a three million dollar grant over three years, so we’re allocating dollars so that we will be able to hold a dollar there’s a research grant so that we know that it will be able to be spent over the course of the life of the grant s o that were allocated as opposed to spend is important and the other word. That’s important. His sustainability and it’s. Not about sustainability of my job or carries job, that kind of thing. I’m concerned about sustainability of the funds that are allocated for various research projects or projects that have a lifetime of over one year. And that’s. Why? We are doing the kind of very thoughtful planning that we’re doing so that we don’t find ourselves in a position of being in a new norm, perhaps, of a budget of forty million. And then within two years time having that new norm go back down to twenty one. We issued to the board a little bit bored always there is a hot topic for non-profits of all sizes, you did talk a little about the fact that they’re very involved in the planning process. How do you do you foresee an expansion of the board? Because of this at all? It’s, we’re not gonna be expanding the board, you know, we’ve got, you know, every year we have a certain number of people whose terms role and they were lost the board, i think probably what it’s done is it’s allowing us to look critically at some new key people to assess the level of involvement they want to have with our organization. Also, now that you’ve met some potential, do you remember? Scharpnick so, yeah, we’re looking at all of that, but, uh, you know, we’re not going to go in and take our board of right now twenty three, people interpret into a border fifty, because that doesn’t make any sense e-giving didn’t think the shooting getting dink, dink, dink, dink, you’re listening to the talking alternative network duitz to get you thinking. Dahna cubine have you ever decided to reinvent yourself? Are you navigating a new life’s journey? Are you an aspiring artist that’s looking for direction? This is kevin, barbara, ll and my new show, coffee talk three point, always your new best friend. Tune in live to hear successful professional artists and their inspiring real life adventures. Mondays at two p m eastern, right here at talking alternative dot com stand neo-sage no this’s, the cook said about wear hosting, part of my french new york city guests come from all over the world, from mali to new caledonia, from paris to keep back french is that common language. 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Interested simply email at info at talking alternative dot com dahna oppcoll could be anything from the web uh, one question from roger, who has what do you what do you think is the biggest challenge entertaining the one point two million donors who elected teo continue their when i say one point two million using the figure that is sort of what i’m looking as across the board in the country, you know, we know that we know that we have a consistent just so i can say this a consistent five hundred thousand new donors from the online stuff, looking at what we know, what we’re learning from our chapters in terms of donors who want to be engaged and that’s how it gets that one point two million just so clear, thie all right, now, what was the question? What is the what is the biggest challenge to retaining those donors? These challenge to retaining the donors is making sure that we understand their expectations on and they were able to meet their expectations and engagement engagement, but that’s part of expectations if they’re expecting to be engaged of certain level, we’re going to make sure that we’re meeting that, but if they’re expecting really to hear from us. Just a couple times a year, that expectation we need to meet. So it’s, it’s it’s looking at the expectations and then rising to the level of the expectation that they don’t have. How has social media planning changed or social media activity change? Well, social media has been not stop twitter, facebook, all of those that non stop it. So actually, we’ve got meetings on monday to really start taking a look at what our messaging strategy is going to be from this point going forward and what that looks like in the social media world is that stephanie who? Uh, stephanie isn’t tulani work-life to meet you? Yeah, stephanie should be sainted. I agree. She should be saying, saying stephanie yeah, very simple. Your outstanding e-giving getting me in touch with barbara working out the logistics. Thank you, stephanie, but she should be sainted because there’s, another person that worked truly twenty four seven, in fact, show that personal. Well, stephanie doctor, as are our social media princessa cubine person besides carrie. Yes. That’s what? My point? My point as though is carrie carrie was going to relieve stephanie. I’m gonna tell this funny story. She’s gonna relieve stephanie, over what? I want to hear the backstory on her back she says that she was gonna really stephanie one weekend in two hours into it she goes, i get a text or a phone call for carrie’s coz i don’t think i can’t take this anymore because it was just so intense, and stephanie has obviously just the right demeanor on handled it well handled it she’s a carrier, what was going on? What was going on then? Just answering a lot of questions and the volume there was the volume that was crushing your volume just people’s passions, their intensity there intently and are coming through. And i just you’re being responsive and respectful and just keeping up with e i think we learned i will also say this. I think we all learned a lot about human behavior during this period of time. Uh, you know, if you want the backstory, that story is a good stuff took one forty five minutes. All right, now, what did you learn about human behavior? Well, that behavior is to be honest with you, i found that people there were a lot of people the twitter and facebook that just were pretty rude and unkind and, you know, there’s a difference between being a critic and then being downright rude and offensive how style? Because you were doing so well, some of that some of that because we weren’t just getting money in and putting it out the door, and, you know, some of it, you know, because we didn’t couldn’t have immediate answers to questions. You know, when you take an organization that is a small organization at twenty one million and the national budget, and then you add the chapters in it were probably up to fifty million or so you take an organization like that and dump what he coming here, the way that it has. If you’re wise, you want to say that people were going to plan now, that would be the wisdom part of it that you would think is common sense. Well, what i’ve learned, his common sense is not common tio ever went and s o, you know, i stop kerry’s taken her shots, all accepting the shot, but i get, you know, i’ve had the luxury of being called all sorts of really on in-kind names from things that are just vile to things that just were so hurtful. And anybody who knows me knows that i have that i don’t process well and s so i went home and tears a few nights going, i don’t believe this, you know, you people would want to be nice there’s, a double side to social media and unlimited audience engagement, and you suffered something that part, but that was a small part. Yeah, it was a small part, but it was just those people become very vocal, even though their small numbers they’ve become very bold on social media because that’s their platform more questions, cody seven years e-giving you’re asking questions about four minutes left? Okay, do you have questions? Yeah, thiss questions from mike, do you think would have had more access to the potential donors that that the challenge on facebook and twitter if you had managed the engagement on a platform and i sued by that, he means a platform of your own? Ah that’s all that’s all speculation yeah, i’m not sure about that, you know, i’m not sure about that, but, you know, i think we’re engaged a lot with our donors, you know, somehow i feel like i’m losing some of a message here because i don’t want you all to think that we’re not engaged with our donors, the other new donors because we were very much engaged with them now, but if you’re asking for specific strategies on where we’re going to go and how we’re going to get there, i can’t give you that yet. Everything on coming back to take the weekend thank you. We’ll be looking on tuesday. Oh, yeah, you can report back to you. I mean, you know, it’s, what they’re dealing with enormous scale in or it was dumped on you within six weeks or so, right? And i’m brand new. I mean, i barely knew some of that. I didn’t know my boardmember snakes when this all started, barely some of them. I still will meet for the first time. Face-to-face enough. Thanks for doing this before. Not don’t want todo thank you. Anything else from the web now? Okay. Uh, just governments left. What is? Just since june it’s been what is it that you love about the work you’re doing? Oh, well, my favorite thing about the work i’m doing are all the people that i meet, i want them to have a less, but they have enriched my life as i need individuals with a less and i have to admit this, i’m a chapter girl, so i love the work. There are chapters d’oh, and i love getting out and seeing what they’re doing and being up right alongside them. I love going into our centers of excellence, seeing the good work that our research docks are doing there. So it’s, just i enjoy getting out among the people. I’m not very good, but i just have to sit in my office because i want number one it’s, always very busy, but i really like being out with people thirty eight chapters to support and be good to write, and they’re good to me. Metoo we’re wrapping up, uh, thank you for coming again they r a l s a dot or ge, and on twitter, the air the day less ideas at association next week, maria semple returns she’s, our monthly prospect research contributor and the prospect finder we’re gonna talk about in-kind gif ts how do you uncover them in your community? What are they? How did they get treated about in-kind part of today’s show find it at tony martignetti dot com fund-raising fundamentals at the chronicle of philanthropy that is, a monthly ten minute podcast, a burst of savvy information devoted to fund-raising always smart people on i am just a host of fund-raising fundamentals, i bring smart people, they talk about fund-raising basics in photos that philanthropy dot com and also at twenty martignetti dot com and also on high, too duitz thanks again to the chronicle of philanthropy for hosting us miree sweitzer, web editor thank you, non-profit radio is supported by generosity. Siri’s they host those multi-channel ity five runs and walks, they have a charity support team helps each of their charity partners their generosity siri’s dot com user code, jr creative producer is playing hyre off the show’s social media is by julia campbell of jane campbell. So today is the most traditional durney martignetti non-profit you is from spicer haserot stronghold blessing our music. By scott steiner. Roland hoping you will be next week non-profit radio. Big non-profit ideas for the other ninety five percent. Well, that’d be great. Talking alternative radio twenty four hours a day. Are you stuck in your business or career trying to take your business to the next level, and it keeps hitting a wall? This is sam liebowitz, the conscious consultant. I will help you get to the root cause of your abundance issues and help move you forward in your life. Call me now and let’s. Create the future you dream of. Two, one, two, seven, two, one, eight, one, eight, three, that’s to one to seven to one, eight one eight three. The conscious consultant helping huntress people be better business people. Buy-in have you ever decided to reinvent yourself? Are you navigating a new life’s journey? Are you an aspiring artist that’s looking for direction? This is kevin, barbara, ll and my new show, coffee talk three point oh, is your new best friend. Tune in live to hear successful professional artist and their inspiring real life adventures. Mondays at two p m eastern, right here at talking alternative dot com stand neo-sage. You’re listening to talking alt-right network at www. Dot talking alternative dot com, now broadcasting twenty four hours a day. Have you ever considered consulting a road map when you feel you need help getting to your destination when the normal path seems blocked? A little help can come in handy when choosing an alternate route. Your natal chart is a map of your potentials. It addresses relationships, finance, business, health and, above all, creativity. Current planetary cycles can either support or challenge your objectives. I’m montgomery taylor. If you would like to explore the help of a private astrological reading, please contact me at monte at monty taylor dot. Com let’s monte m o nt y at monty taylor dot com. I’m the aptly named host of tony martignetti non-profit radio. Big non-profit ideas for the other ninety five percent fund-raising board relations, social media, my guests and i cover everything that small and midsize shops struggle with. If you have big dreams and a small budget, you have a home at tony martignetti non-profit radio friday’s one to two eastern at talking alternative dot com. You’re listening to the talking alternative network. Yeah.