Unlocking the Power of Community in Peer-to-Peer Fundraising - Hannah Lowe

6:51PM Oct 25, 2022

Speakers:

Julie Confer

Becky Endicott

Jonathan McCoy

Becky Endicott

Hannah Lowe

Keywords:

people

nonprofit

story

hannah

campaign

austin

community

fundraising

incredible

raise

families

friends

world

rabid fans

hear

create

check

thinking

week

called

Welcome to GivingTuesday prep week presented by gift butter. We're excited to put some intentional focus on a week of inspiration strategies, hacks and tips to help you make the most one of the biggest giving days of the year.

Neon one makes software solutions specifically built for nonprofits. You can finally have your donor management fundraising software, program management and nonprofit operations all in one place. Learn how neon one can help your nonprofit create long lasting relationships by visiting Mian one.com backslash we're for good.

Hey, I'm John. And I'm Becky. And this is the We Are For Good podcast.

Nonprofits are faced with more challenges to accomplish their missions and the growing pressure to do more, raise more and be more for the causes that improve our world.

We're here to learn with you from some of the best in the industry, bringing the most innovative ideas, inspirational stories, all to create an impact uprising.

So welcome to the good community. We're nonprofit professionals, philanthropist, world changers and rabid fans who are striving to bring a little more goodness into the world.

So let's get started. Yo, yo, Becky, what's happening,

John, we're just honored Can we just say that we're honored to tell this story. Today we're talking to a warrior mom. And I was telling John and Julie before this podcast started that there are literally no forces of nature stronger in this world than a warrior mom who is convicted and chasing after protecting her cubs. And we're gonna get one of those stories today. And I am just so honored to have Hannah Lowe in our house today. She is a passionate advocate and founder of LC MD Research Foundation. She has just a really hard but also powerful and empowering story about her two year old son Austin who has a fatal muscle wasting disease called element A related congenital muscular dystrophy. And in order to save Austin, and other children that are similarly situated like Austin, they started the thing that they wanted to see in the world, which was the LC MD Research Foundation. And so they're working with researchers and scientists who are developing treatments and a cure for this disease. And they kind of just took the bull by the horns, the money wasn't coming in fast enough. And they said, You know what, we're gonna raise this money ourselves. So this is a true story of community is everything in action, and their fight to raise $2 million to fund the various stages of this gene therapy project. And so I don't want to take any more of Hannah's story, because she started this fundraiser on gift butter, who is just an incredible partner to us. And we want you to listen to this story, because it is the power of pure fundraising. It is the power of digital transformation in tech. And it is the power of what can happen when you take rabid fans who will not let something fail and put it into action. So Hannah, we are so honored to have you here. Get up to the mic, and we're excited to meet you.

Thank you both so much for having me. It's an honor to be here. And I just so grateful for any opportunity to share Austin's story and what we're doing, so I appreciate it.

Well, we want to hear the story. We want to hear the story of your family and take us back. I know there's a lot of parents out there listening. There's people who care about children's causes. And we want to know the inception story and how this all began.

Yeah, absolutely. So, you know, Austin was born and 2019. And we had no indication that anything was amiss, right? Like he was born. He was we brought him home. He was a typical little guy, he, I will say he wasn't a great eater, but it was all kind of within the realm of normal ish and whatever, it'll be fine. And about six months old, his doctor said, Okay, he's not gaining enough weight. Let's admit him to the hospital. And we'll just check them out and see what's going on. We'll make sure he gets enough nutrition. And we were a bit hesitant, but we thought, okay, we'll do it. We'll get everything fixed up, we'll go home. And that's the end and we'll live our lives. Let's move on. And instead, we were in the hospital for about three weeks. They put in a feeding tube to make sure he had enough nutrition. And they ran genetic testing. And after those three weeks, they came to us and they said we found something. And naively I thought, Oh good. Like we have an answer. But that was not really the right thing to say because they said that he has a randomly occurring mutation in his DNA that causes this rare and fatal form of muscular dystrophy called LC MD. And at the time, they told us there were about in the literature, there were about 50 children in the world known. Now we know it's closer to 200. And really all the time new cases are coming up as genetic testing is more and more widespread around the world. So it's definitely shocking and traumatic to sit there, when the doctors tell you that, you know that there's nothing to be done for your kid, when you think you're just gonna go and quote, unquote, fix something and then go home. But instead, they say, actually, you know, your kids basically could die at any moment. And, you know, you're just in a state of shock, like, What are you talking about? What are you? What do you mean? And really, like, how could this happen to me, right? Like, I think we hear these stories frequently enough, and myself included 100% of the time, we think, Oh, well, that could never happen to me. But it 100% did happen to me. And it's not like this is an inherited disease, it doesn't run in our families, like, it's just a random situation. So we kind of gathered that information, I think, and it was about a month before the shutdown for the pandemic when we got the diagnosis. So a little bit of a silver lining for us with a pandemic was just that, we were able to really stop and regroup and work through some of the grief and figure out how we were going to live our life. Because basically, you know, the disease causes muscle wasting already, he can't sit up, he can't hold up his own head, he still has the G tube, and he always will. And then of course, you know, the heart being the biggest muscle. So the kids typically passed away from a heart attack, or respiratory insufficiency, complications with pneumonia, that sort of thing. So just coming to grips with all that we just started networking with people with other rare disease families and with researchers and just started digging, I think that pandemic afforded us a little bit of free time to dig right and pick at it and say, like, what can we do like, already, you do so much for your kids, right, like to take care of them. And like you said, in your intro, you would just do anything for them, whether it's taking them around to the doctor or to feed them healthy food or whatever. So of course, we were just going to dig and see what, what could be done. And we just, we found hope in that there were other families facing other rare diseases, but who were on a similar journey of wanting to advance science and figure these things out for their kids. So they were like a huge support system for us right up front, introducing us to researchers introducing us to other people who had started nonprofits. And we just started taking those steps to set up the nonprofit to figure out what research we wanted to do. And just to learn about the disease even.

I mean, y'all are so incredibly strong. Thank you for bringing us back to that time. Because honestly, as a parent to I'm just thinking of what it's like to be sitting there and receiving that and even how to deal with that. So I'm good on y'all for just the way you processed and, you know, worked through it. And as we think about you starting this nonprofit, like I'm also just like in awe that Chuck had right rally to do that. So I want to celebrate y'all that you're zooming out to say, well, what can we really do to like change the trajectory of this for everybody, not just our son here? What was that? What were some of those original moments? I mean, you've started you've officially started the foundation. What was the origin story beyond that? Because I mean, we're gonna get to this campaign that y'all created, which blew our minds and talks about the power of community coming together. But like, what were the next few steps? I mean, you've kind of got the logistics worked out, what was it like the last few months getting to grow it and start it?

Yeah, right, those logistics, man, those are tricky. And once you kind of figure those out, then you just start looking at, okay, what can we do? So basically, through the support and guidance of these other rare disease families, they really laid out a roadmap for us as to what was feasible in terms of research, and they connected us with the right scientists to get us on the path. And then we could start to organize our thoughts around okay, what is this stuff going to cost and it's not cheap. You know, any of these projects are not cheap. So you have to think about prioritizing and what's going to make the biggest impact. So we started down the path of wanting to create a gene therapy and like without getting too in the weeds about it. Basically, it would be a treatment for correcting the expression of the DNA, that's right now being incorrectly expressed, if that makes sense. Basically, you have to do a proof of concept that this is going to work, you have to do a toxicology study to make sure that it's not dangerous. And then you have to go through the process of getting it cleared with the FDA and design, how it's going to go to people, etc, etc. In speaking with people kind of the grand scope of that will be about $2 million dollars, give or take. And you know, hopefully somewhere down the path, there might be the opportunity to bring on like kind of bigger partners, like pharmaceutical partners, or biotech partners to help us along the way, but that initial stage really falls to these families and nonprofits, because a pharmaceutical company isn't going to get out of bed for 200 kits in the world, right? So they're not, they don't have any motivation to kind of start and launch this thing. So you have to start it, you have to launch it, you have to get it far enough along to say, look, this is could be something and then hopefully, you know, garner interest from other players. So yeah, so we kind of set with this 2 million goal in our mind. And then we thought, okay, how are we going to raise $2 million? Like, we're not going to basically do it off of a bake sale. So what we do? And, you know, just to your point about the power of community, again, it was just friends, saying, Hey, do you want to talk to my friends, so and so and then that person saying, oh, you should talk to my friends, so and so. And it was like that, like I always have, and still do, I will talk to anybody about anything, because you never know, like, what pearls of wisdom, wisdom, you're going to glean from a conversation, or where it's going to lead. And I think I spoke to a friend's college friend. And she was the one that really gave us this inspiration for this two, before two campaign that we're running on, give butter and this peer to peer fundraising idea.

I just want to say that I wish there were a million more Hannah's out there, they have the whatever it takes mentality, to throw the playbook out and say, I'm not gonna play by these rules over here, I'm just gonna go find the damn money. And that is exactly what you did. And I think even you just sharing that story isn't completely indicative of what we talk on this podcast all the time about, which is the power of the one to one. And you're literally talking about the ripple that from your friend in college, to this person to this person. And we haven't even told the audience how much money you've raised thus far to this $2 million goal, you're over 75% of the way I'm looking at it right now. Over $1.5 million dollars from 2.4. Well, 2.4 2.4 1000 to 2400. Supporters, you made that ripple happen. And we're just in awe of you. And I just want to talk about the power of community, and fundraising because guys, you've heard it here 100 times that the campaign is not just a campaign, the event is not just an event. This is not just a Giving Tuesday conversation, because this is something that transcends the one day, and what we're trying to inspire with crowdfunding with peer to peer fundraising, the way that we activate the rabid fans, we cannot be thinking so siloed and linearly about this one day. So talk to us, Hannah, about the power of community and fundraising. I mean, you tell us what you've learned about what community can do when they hear a story like this?

Yeah, absolutely. I think we knew we couldn't do it alone, right? It's so daunting. And we reached out pretty much to everybody we know everybody we've ever met. We really broke it down into Okay, who are the people we grew up with? Who are the people we went to college with? You know, my husband went to grad school, who are those people who would who have we worked with in all our various jobs and our families and everything. And we either wrote emails or called so many people personally to say, this is what we want to do. Will you help us? And you know, we got some people that were like, No, I don't have time to do that, as kind of the snowball effect got rolling, and we spoke to more and more people than it was like, people we didn't even know kind of showed up for us and that was amazing. And just so heartwarming, you know if my sister is really on board, and she reaches out to to 10 of her friends that maybe two of them are young moms as well. And it really resonates with them and they want to do something about it. You just never really know what part of the story might resonate with somebody.

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Learn how gravity is community engages employees and in return keeps them happy, involved enriched and motivated. Learn more@gravity.com That's gravity grayty.com. Now let's get back to this feel good conversation. I think I mean, you were describing. First of all, you're just an incredible fundraiser and you don't even realize it right? The way that you're able to cast vision and invite people in and ask and not get discouraged. But keep getting out there and going after it is beautiful. Because this community is everything kind of banner that we're talking about all the time, you're describing things that we see in our community that just makes us so happy because stuff starts to happen that you can't explain. And that's the beauty of this ripple that has been created. So I wonder if you would just kind of share a little bit as like, as that campaign started. How did you roll it out? And now you'll have this beautiful video there. Now, was that always part of it? Or how structurally did you build this campaign to get this momentum?

Yes, so everything we heard from all the other rare disease families was you have to have a video, you have to have a moving video. And all these people, like, you know, they will create these beautiful storytelling videos. And we didn't really have the time or the resources to do that. So between like an iPhone, a ring light, and my husband writing the script, we just like, knocked it out in a few takes. And you know, if you watch the video, I think Austin either like blows a kiss at the end or something like that. It just totally was just it was just tried it and he just did it. It was like wow, okay, dun dun. And yeah, it's not, it's not super polished, but it is what it is. And my sister added the captions in the music, and it was a family affair. So we that was kind of our anchor or anchor piece of material, I guess, if you will. And then what we did was, after having contacted so many people to tell them what we were doing, we invited everybody to a zoom kickoff. And not only did we invite everybody we had spoken to we just like mass emailed everybody we knew we put it out on social media, like come join us see what we're doing. Come on the Zoom. And I think we had about 130 people on a zoom on a Friday night. Whoa. And we told the story. And we said, this is what happened, and this is what we're doing. And this is how you can help. I do think we had the benefit of the fact that we hadn't been super open and shared a lot already. Because it had been about a year since Austin's diagnosis at that point. And we said our plan is to raise 2 million $2 million for this research and We cannot do it alone. And we cannot just ask you all here to donate, we also need you to ask everybody, you know, to donate as well. And we had pre chatted with people about creating teams and saying like, this is going to be our friends from work team, or our friends from home team or whatever. And we kind of had all that admin stuff like setup already in give butter, so that on the Zoom, we could say, here's the link to join. And, you know, find your friend group and join that team. And, you know, something that was very awkward for me, but I just pushed through it was trying to say, like, on that Zoom, like, who can commit to doing this? Raise your hand, and like, who can anybody commit to raising $10,000. And it was very crickets, really, but, but I do feel like it's set the expectation that like, we were asking people to do a lot. And some people really were like, I don't think I could raise $1,000. But then they did. And they were so excited, like, so proud of themselves, and I was so happy for them. And then some people got really competitive, and they're like, I'm gonna raise $10,000, or like, we as a team, we're gonna raise $100,000, or whatever. I just sort of organically grew. But we made a really tight timeline, we said, we're going to do this for four weeks, we're going to have a check in zoom. Every week, we're going to have, you know, a theme for the week or an action item for the week, we're going to send out email templates, so you can email everybody easily. We're going to send out social media posts, uh, you can do all that. And then at the end of the four weeks, we kind of had a wrap up zoom. Yeah, I think by the end of that four weeks, we had raised about half a million dollars, I believe. We had some big donors in there as well, you know, come in through, but it was that was the really big push. And I think what also did it was, you know, getting all those people really excited and invested that they then like, stuck with us, right? Because the rest of 2021 This was when we did it. We did so many other events, virtual events, auctions, all that stuff. And people were already like, teed up and excited to either get involved or help promote or whatever it was, and it didn't seem to like come out of the blue then.

Okay, I gotta like to hit pause on this and just congratulate you on your incredible Moxie for thank you for your incredible intuition to know how to sequence these things. And I gotta break this down for our nonprofit listeners. Because I think what you just described was one of the great modern day takes on how to enact peer to peer fundraising, that's more than just I'm going to share this on my Facebook. So here's a couple things that I heard that I want to make sure our listeners do not miss. That were incredible hallmarks of the story. One, you created a video, and I feel you apologizing for how low tech it was. But I want to tell you that that I think is a great catalyst for vulnerability, emotion, and connection. The more raw that it is, the more that it strikes somebody who's at home who's thinking, this could be me and my child. And this could be me turning my iPhone around and telling the story to you did what I call the modern day, house party fundraising event used to see this like, and we still have is we have nonprofits that use this, gather 20 people in a room have a lead gift, cast the vision, ask everybody to join you up the ante and said, Okay, coming your pajamas on a Friday night, as many as you can. And we're going to tell the story. And we're going to throw some goals up there. People didn't think they could do it. But the fact that you help them and you gave them these tools that there was this platform I love that you picked get better. And they had all the tools. So it didn't make it so unapproachable and unattainable. And then you just kept checking in, and not in a way that felt heavy handed, like where's your money? Where How are you to your goal, it was, hey, let's celebrate. We just had something happen in the collective. And everybody is going to celebrate that win together. So I'm just thinking that this story that you're unpacking is one of the great case studies of what can be done in modern fundraising when you decide to lean all in. And I think this is a hard thing to do. And I want to make sure that you understand how wonderful it is that you've that you've opened up your heart. And your life is an open book. You've let people into your home to have access to understanding your child. And I think the humanity of that is what's translating and so I want I want to talk about your believers. And I want to talk about because we talk about believers all the time on this podcast, because believers are much stronger and more powerful to campaigns, and to fundraising and to movements than a donor, because they won't let it fail. So talk about these people who stepped into their power, and how are they supporting your mission beyond just the fundraising,

there have been some incredible, incredible people that have just risen up and come to support us in so many incredible ways. I want to backtrack for one second, just say again, that like, we did this on our way, but in no way where any of these ideas are babies, like we're sat in on so many calls with other fundraisers and whatnot, who gave us really incredible advice. So I cannot take credit. I also can't take credit for but I'm so appreciative of, like you said, all these believers that just had their own ways of getting involved. And it often wasn't the necessarily the people we expected it to be it sometimes it was right, like my sister did amazing. She had I think, like her own for different teams on give butter of all her different friend groups. And that was incredible. But then, you know, it's like the friend of a friend, who just is checking in all the time and saying, How are you guys doing? What's going on? How can I help and who helped. There's one gal she has two young kids as well. And she not only helped me organize to online auctions, but she has just kind of continued to always check in always share our social media posts, even kind of after things have ebbed away a little bit in terms of urgency.

I mean, goodness, the warrior mom, like I mean, Becky kind of tone set with that I feel that come in through just this entire story. And just what a beautiful legacy you're creating about about Austin to at the center of this. So I mean, okay, let me break down a couple quick things that I'm hearing from you, because you're like this brilliant fundraiser leading this effort. I'm hearing though it is not the Easy Bake Oven, this is not you buy this, set it and forget it. It's not that, I mean, I'm hearing that you built these assets, you got people together, you gave them, you empowered them to tell the story, you're getting on social, you're having these conversations, you're doing all of this. So I think, you know, someone that looks at your campaign to be like, Wow, that was really easy. Flip this on, and a million and a half dollars came in. That's not exactly the full story. You know, y'all really did take a lot of the steps to do this. And I think that is the beauty of just y'all working at it and your love poured into it, and what a beautiful success and in the midst of that. So I want to give you a chance to talk about story because it's one of the drivers of our podcast, we love philanthropy and just what it does to the giver as much as it gives to the receiver recipient. Is there a moment along your journey so far that stuck out to you that you'll never forget philanthropy?

Yes, I mean, so many for sure. But certainly, we've had a few you know, good friends call us up and say, you know, we really want to help we really believe in what you're doing. And we want to gift you X number of dollars, which has been a big number, a bigger number than we would have expected. And I just get blown away over and over again, even thinking about having those conversations because it's been a few different people and it's even been like these friends and then their parents as well also donating a big chunk of change. Sorry, if you hear Austin in the background love yammering away and not the edit it out. He's having a good time. But yeah, I mean, just those moments where you're like, wow, these people that I have been friends with my whole life, they really, really, really believe in us and they trust us and you know that they're involving their families as well is just so touching.

It is just I said this phrase earlier, and I just keeps coming back to me that it takes a village and something this big, and this hairy and, you know, this seemingly insurmountable you've, you've made it possible. And I, we end all of our conversations with one good thing. And I have one, but I'm gonna go after you. So tell us first like, what's the one good thing you could LIS leave with our listeners? It could be a life hack, piece of advice. What would you leave with our group?

My piece of advice, which this day and age I don't know if this is a popular or unpopular opinion, but my opinion is that Do you still kind of have to fake it till you make it? mindset, you need to tell yourself that you can do it and you just do it. Because asking people for money I don't think comes naturally to everybody. Certainly not to me. And it's so personal for me, which is good, because on the one hand, it's just like, I just got to do it. Like, I don't have a choice, I got to ask for the money. On the other hand, you know, it's so personal. So you, you can't feel removed from it when somebody says no, or they come in lower than you want it or whatever. So just that mindset of like, you just got to push through, you just got to do the uncomfortable thing. pretend like it doesn't make you uncomfortable. And just make the ask. And the worst they can say is no,

the worst they can say is no, every single time. And so my one good thing that I'm pitching is a question to the group. If you are listening, and you feel so drawn to the story, if you are looking for something in the world right now, that is a beacon that needs some light, and you want to be liked to somebody, we made a gift to this campaign while we were talking, we're for good made a gift. And it's an honor of our children. All the moms and the children out there, if you feel convicted, please join this campaign. We don't often ask for gifts, or podcasts. However, this is this is a story that we we want to shout at success from the rooftops. And this is one that started in the place that we love so much, which is at the base, it started in grassroots. And we want more people like Hannah, taking the thing that is a wall and busting through the wall busting through the ceiling. And so I want to put that challenge out to anyone who has the means and the ability to do that. But I also want to kick it to you Hannah and say, How can somebody be a part of this campaign? We're certainly going to drop the link to the campaign in our show notes. And that'll link right to the gift butter campaign. But how else can people get activated and connected to L MCD? Foundation?

Well, first of all, thank you both so much. That's so sweet of you. And I really appreciate it. That's incredible. The best place that I update the most frequently I think would be our Instagram, which is LCM d dot Foundation. And I do a monthly newsletter as well with updates. If you want to get on it, I would just either message me there or shoot me an email, which is Hannah at LCM D research.org.

I mean, it has been like such an honor to hang in your presence today and just grateful for the way you're pouring in to this work in such a meaningful way. Like this has been an amazing time. Thank you.

Thank you all for having me. Thank you for your support. And thanks for amplifying the story.

Always and you go over there go give Austin the biggest mama hug from us and you just roll up your sleeves and know we're rolling up our sleeves to and you've got an army of people behind you who are rooting for you and want to cheer you all to success. So thank you my friend.

Hey, friends, thanks so much for being here. Did you know we create a landing page for each podcast episode with helpful links, freebies and even shareable graphics. Be sure to check it out at the link in this episode's description. You probably hear it in our voices but we love connecting you with the most innovative people to help you achieve more for your mission than ever before. We'd love for you to join our good community. It's free. And you can think of it as the after party to each podcast episode. You can sign up today at we are for good.com backslash Hello. One more thing If you loved what you heard today, would you mind leaving us a podcast rating and review? It means the world to us and your support helps more people find our community. Thanks friends. I'm our producer Julie confer and our theme song is Sunray by Remy Borsboom