L-CMD Research Foundation raising over $2M through Givebutter to fund gene therapy research

In this video, I’m joined by Hannah from L-CMD Research Foundation. Hannah created the L-CMD Research Foundation after her son, Austin, was diagnosed with a fatal, muscle-wasting disease called LMNA-related congenital muscular dystrophy (L-CMD). Right now, the L-CMD Research Foundation is raising $2M before Austin's 2nd birthday to fund a gene therapy project that could save his life and the lives of other similarly situated children. Good news: they’re nearly halfway to their goal! Hannah’s sharing:

• Why they chose Givebutter (Hint: Peer-to-peer fundraising!)
• What has made this campaign so successful
• Tips, tricks, and lessons learned for expanding your reach to deepen your impact

“We researched a lot of different platforms to use and we got to know Givebutter and we really liked all the features and the ability to do the peer-to-peer fundraising and events and everything. It just seems so user friendly. That's how we came to be on Givebutter. I would say the biggest chunk of our success so far has been in peer-to-peer fundraising.”

Get ready to take notes!

Campaign at a glance

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Full video script

Rachel: Hey everybody! Rachel here with Givebutter. Thanks for joining for another Success Story from the Givebutter community. Today, we are highlighting a really special campaign: the L-CMD Research Foundation’s 2 Before 2 campaign. Right now, they're raising $2 million to fund the research and development of LMNA-related congenital muscular dystrophy, or L-CMD, before Austin’s second birthday this August. So far, they've raised over $771,000. Yes, they're getting close to the halfway mark! I have Austin's mom here with me. Hannah is going to share how they made this ambitious and heartfelt campaign so successful as well as tips, tricks, and lessons learned along the way. Hannah, thank you so much for joining and sharing your success with us.

Hannah: Yeah! Thank you, Rachel. Thanks everybody at Givebutter. It's been really nice working with you guys.

Rachel: To start, why don't you go ahead and introduce yourself and a little bit more about your foundation.

Hannah: Sure! I'm Hannah. As Rachel said, my son is Austin. He is about a year and a half old, and he has L-CMD which is a rare and severe form of muscular dystrophy. He was diagnosed last year through genetic testing, and it was a completely brand new DNA mutation that neither my husband nor I have, so we were completely shocked. What the diagnosis means is essentially that his muscles are going to get weaker and weaker—in particular, his heart and his lungs. They just really couldn't tell us how long he'll have to live. However, his mind is sharp and typical. He's a happy and funny little kid. They also told us that there is nothing to do and to just go home and love him and enjoy whatever time we have together.  Obviously, we absorbed all that and then started processing and researching and figuring out, okay, what's out there in the science community? What could we glom on to? What can we do? We ended up basically discovering through networking and talking to people that there are scientific technologies that are advancing all the time for these rare genetic diseases. It's just a matter of finding a researcher who's willing to dive into it and translate what's already been done because there has actually been a lot of research done. Translate it into a treatment or into something that can go into patients. So, we started this 501(c)(3) nonprofit during the pandemic. Went through that whole process to get that tax exempt status and, along the way, we found a bunch of partners to work with. In particular, we came across two researchers—one at UMass Medical and one in Madrid, Spain—who were willing and excited to collaborate and help us as well to create a gene therapy treatment for L-CMD. Then, we launched this 2 Before 2 campaign to fundraise for that specific project. And yes, as you mentioned, the goal is $2 million before Austin turns 2 in August. We launched the campaign on Valentine's Day of 2021 because that was the one year anniversary of when we brought Austin home from the hospital with his diagnosis. We kind of did a soft launch. We weren't really expecting to go full out, but so many people came forward and wanted to help and wanted to donate that we're like, “Okay, let's go!” We researched a lot of different platforms to use and we got to know Givebutter and we really liked all the features and the ability to do the peer-to-peer fundraising and events and everything. It just seems so user friendly. That's how we came to be on Givebutter. I would say the biggest chunk of our success so far has been in peer-to-peer fundraising.

Rachel: Nice!

Hannah: Basically what we did was we reached out to everybody we know—all of our friends and family—and we all got together on a big Zoom. It was like 130 people. We told everybody the story, told everybody about the research, told everybody about the fundraising goal, and asked everybody to create pages on Givebutter and just start reaching out to all of their networks. I basically did a Dropbox for everybody that had email templates, social media posts, thank-you letter templates, pictures of Austin, our foundation logo, FAQs—everything! It was quite a full, maybe overwhelming, Dropbox full of information for people.

Rachel: Sounds really helpful.

Hannah: It was! We said, okay, we're going to do it over four weeks. We don't want to burn people out asking and asking and asking. Each week we had a little theme. Week number one is just email everybody you know. Week number two is follow up and then maybe start posting on social media. Week number three was I think maybe all about company matching and making sure that everybody who had already donated was submitting for their company match. We really appreciate that Givebutter has such robust reporting so that each of our solicitors could go back to everybody that they had reached out to and follow up. I did do some reporting out to different folks but people I think were also able to get that information themselves, which was really cool. I think week four we just kind of wrapped it up. Follow up again, do some more social media, do any thank you’s to folks who have already donated. Then we kind of moved on from there, but that was our initial push and I think we got to about half a million dollars just in the four weeks.

Rachel: Incredible!

Hannah: That was a good way to start, for sure!

Rachel: It’s amazing! The work that you're doing, your story, Austin—just incredibly inspiring. Your community has just really rallied around you and you've provided such helpful guidance for them along the way. I was going to ask about team fundraising because that was something that stood out to me. Your team pages just seemed so well put together. They weren't just carbon copies of everything else; they felt really personal to me when I was looking at them. I know everybody—all of you who are following along right now—are like, “Show us the campaign!” Here it is! It's so beautifully done. Your header video is like a Ted Talk on elevator pitch for fundraising campaigns. If you're looking for a template and example everybody, this is it. This is the one. Check it out, it's only a minute and a half, right?

Hannah: Correct.

Rachel: Just so good, so well done.

Hannah: I will give all the shout outs to my husband, Mark, who wrote the script because I was trying to do it off the cuff and it was a mess. He was like, “No, no. Here's talking points and my Amazon ring light.” We did it probably eight times, and this was the best one with Austin really being engaged. Then my sister kind of edited in pictures and videos, did the captions, and did the music. It was a team effort. So yes, for a minute and a half it worked out.

Rachel: That's awesome. It's so well done. You can see the team members here and if we were to keep loading, it would just go “Load more” forever and ever and ever. There's so many people on your team. Then, on top of that, you also have team members and teams; you're utilizing both.

Hannah: Correct! What we did was before we launched, both my sister and I essentially reached out to different groups of friends and family and identified people we thought could be team leaders. We basically said that just means rallying the group of friends and emailing them and saying, “Hey, don't forget to send out your letters this week,” or “Don’t forget to check the Dropbox for a social media post this week,” etc. That was really nice that people could, when they signed up for their Givebutter page, they could select the team that made the most sense. “Oh, this is my high school friends,” “Oh, this is my college friends,” whatever. Then, the ‘Hannah + Friends’ here you see has 22 members. That was the default team. If you didn't fall into another category really easily, then just glom on with me. That was what we did. Some teams set goals and some teams did not. I think the majority did not. When we initially launched, we suggested that we felt it was possible for most people to raise $5,000 on their own. Some people I think took that to heart, some people were like, “I'm going to do more,” some people are like that seems like way too much. That was all fine. We didn't really force people to set hard goals for themselves, but we kind of put it in their minds that we thought by asking their networks, their companies that they might have relationships with, that that was possible. For instance, this is something that we were excited about right off the bat was we recently purchased a new home and we asked our homebuilders if they would donate. They were like, “We’ll give you $5,000.” That was our first donation. I don't know if they knew that they were our first donation, but they were. That was exciting. My sister emailed her roofer. I emailed the people who did our blinds—everybody! Just asked everybody.

Rachel: Yeah! And, you’re modeling it for the other teams. Why not? It's more than possible. You just have to ask. I love that you provided structure for your teams to thrive in but then  they had room to flourish where they felt like they could. Some people raised way more. Some raised a little less. Overall, it was so successful! Your teams did phenomenally in one month. Then, just some other features I wanted to point out on your page that are also going so well. Your community is really rallying around the supporter feed. There's so many sweet notes and GIFs and emojis and all the things here, so I love that they're taking full use of really coming together and sharing in that support. Your story section, again, this is just...if you are wondering how to storytell and where to start, you have just provided such an awesome template and example for people who are looking. Breaking up the text with pictures, all formatted well, you sort of have an FAQ going here. All the basics; you’re answering all the questions people would possibly have when they look at your page. You've just made it really easy for people to donate. That's how I felt when I looked at your page.

Hannah: Well, thank you! I will say I can't take credit for all of that. We had a lot of people look at that and edit it for us. Also, I very much glommed on to some other rare disease parents who have similar fundraising pages on other platforms. I said, “Can I steal your formatting?” They were like, “Sure, do it!” So yes, it was definitely a...

Rachel: Crowdfunded?

Hannah: Yes, it was crowdsourced!

Rachel: I love that! Anything else here, as we're looking at your page, in terms of tips, tricks, and lessons learned that might be helpful for other fundraisers who are listening along right now?

Hannah: Yeah! I don't know if this is necessarily the correct Givebutter way of doing it, but after our team fundraising push, we’ve sent set up a series of events essentially. For each of those, I've made separate campaigns. I don't know if that's correct or not, but that's what seemed easiest to me.

Rachel: Yeah, that makes sense.

Hannah: You can duplicate a campaign and it basically pre-populates. For instance, we did a series of online workout classes and I duplicated this original 2 Before 2 campaign. Just swapped out the photo and added more verbiage about the actual event but then left the story as is so people could still see that whole thing. That way it felt really clean to me. I could give people really specific Givebutter links. I think Givebutter.com/May1yoga or something, right? Then, I could also personalize the tax receipt that the person got, so they were getting a receipt that says, “The typical value of this class is $20 or $25. Anything you've donated above that will be tax deductible.” That sort of thing. I also created one for an online silent auction we did. They did the silent auction. I just emailed the winners afterwards and said, “Here's the link to donate. Here's the amount that you bid.” Then I could follow along and say, “Okay, So-And-So made their donation. Now, I can send them their item.” Same thing. I customized the receipt to say, “Any amount you've donated above the fair value of your auction item is tax deductible.” In that final email I had sent them, I said, “The fair value of this item was xyz.”

Rachel: That makes a ton of sense. The way that you did it, to me, makes a lot of sense and it's nice that with your account—I was just showing the page—you can see all your campaigns on one page as an easy reference point. I love that you highlighted the duplicate feature. We don't see people using it enough, so good for you for not making it harder than it needs to be! That is such a great tip for everybody that's following along. I wish we had more time. I'm sure there's so many more tips, tricks, and lessons learned, but you've given us a wealth of knowledge to just think about for our own fundraising campaigns. Thank you again so much for the incredibly important work that you're doing right now and for sharing your story with us today.

Hannah: Thank you so much.‍

Rachel: For everybody else who's following along, thank you for joining us. We'll see you again next week for another inspiring Success Story. Please don't forget to like, share, and subscribe to Givebutter’s YouTube channel, so you never miss a story again. Until then, happy fundraising. Bye everybody!

View campaigns: 2 Before 2! (Cure L-CMD)

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