Amy Thomasson With Cure SMA

Intro: [00:00:02] Broadcasting live from the Business RadioX studios in Atlanta, Georgia. It’s time for Association Leadership Radio. Now here’s your host.

Lee Kantor: [00:00:19] Lee Kanter here another episode of Association Leadership Radio. And this is going to be a good one. Today on the show, we have Amy Thompson with Cure SMA. For those who don’t know, stands for Spinal Muscular Atrophy. Welcome, Amy.

Amy Thomasson: [00:00:36] Thank you, Lee. It’s my pleasure to be here.

Lee Kantor: [00:00:38] Well, I’m so excited to learn about your work. Before we get too far into things, tell us about Cure SMA. Can you talk about kind of mission purpose and how you’re serving folks through that?

Amy Thomasson: [00:00:48] I’d be happy to. So Purisima is a 500 1c3 nonprofit, and we work with folks who have, as you mentioned, spinal muscular atrophy. SMA is a rare disease, but it’s one of the least rare or rare diseases, if that makes sense. One in 50 people carries the gene mutation that can produce SMA. So if you have two individuals who have that gene mutation, they have a chance of having a child with spinal muscular atrophy. And there’s four types of spinal muscular atrophy, type one through type four. And within the last few years, we’ve really made a lot of progress on the disease. We now have three approved treatments, but there is still no cure. So Cure SMA is focused on research and support programs for individuals with spinal muscular atrophy and trying to find that cure.

Lee Kantor: [00:01:40] Now, has your work always been in the association field, or is this something new in this time in your career?

Amy Thomasson: [00:01:48] I spent the first ten years of my career in for profit organizations, in manufacturing and distribution. I worked for a Fortune 500, and in 2015 I made the pivot to the association and nonprofit space. So I’d say I’ve spent about half of my career in for profit and now about half of it and non profit.

Lee Kantor: [00:02:11] So what drew you to the association and nonprofit work?

Amy Thomasson: [00:02:15] I did not know much about associations before I came into the association world, and I don’t think that’s unique to me. I think that’s one point where I wish we could spend more time educating youth about the association space because it’s such a great career path. But I was working for a distribution company that was pivoting our offices potentially over to the East Coast, and I really was ready for a change. I wanted to work for a smaller organization where I could have a more meaningful impact, and I had coffee with a friend of a friend who introduced me to the association space, and it just skyrocketed from there.

Lee Kantor: [00:02:56] Now, when you were in your kind of for profit world, were you involved in the kind of the trade associations and the business associations there?

Amy Thomasson: [00:03:04] Yes. I had been involved in an organization called the Industrial Supply Association, so I was certainly involved in a limited capacity volunteering here and there in the association space. So I was definitely aware of trade associations, but I had no awareness of membership based associations.

Lee Kantor: [00:03:23] And then once you started getting involved in the association world, what were some of the skills and talents that you had that kind of transferred and what were some of the areas you needed to shore up?

Amy Thomasson: [00:03:34] So it’s interesting you bring that up because I think in the career journey to because I didn’t come straight from the association, a nonprofit world, it’s created some pluses and minuses, but I think more positives is really given me a solid understanding of strategic planning, building business plans, sales, managing a profit and loss statement, all of those core competencies I brought over from my corporate life. And I really view it as helpful because within the association space, more competitors are coming from the for profit world. So having that knowledge of the for profit world has really helped to differentiate me and create a niche for me in my career journey.

Lee Kantor: [00:04:17] Now, when you’re working for a cause that has no cure yet, how do you kind of keep folks motivated and and pushing forward? How do you like we have a saying here, like I have a for profit business, but you want to ring the bell, right? You want to have successes and wins to celebrate. How do you kind of encourage morale and encourage, you know, the feeling that you are making progress?

Amy Thomasson: [00:04:46] Sure. So within the spinal muscular atrophy space and not just with SMA, but with our pharmaceutical partners, researchers, health care providers, there’s been a lot of progress. Even 20 years ago, if your child got a diagnosis of spinal muscular atrophy, you were told, go home and love your child because they’ll likely pass before their second birthday. So now we have people living to adulthood with the disease. So that’s hugely. Motivated. But the next steps are how do we help our community in lieu of a cure? Gain more independence, gain more physical functionality over their muscles, and be able to do the things they want to do. But also, getting on an airplane is a major undertaking. A lot of our folks can’t travel. So finding those other key areas where we can help make daily life better for people with spinal muscular atrophy. And also one thing I was just really blown away by with SMA is the personal touch points. So, for instance, if your child is diagnosed with SMA at one of our partnering medical institutions who are part of our care center network, within several days you’ll receive a package of developmentally appropriate toys, a medical binder helping you navigate things with your insurance and your providers. So really trying to create positive experiences. And a lot of our community says those care packages that they receive from us are the first positive touchpoints they have in their SMA journey.

Lee Kantor: [00:06:24] And it must be so difficult for the families because, like you said, it’s rare, but the not not the rarest. So how do you build that community and foster that kind of We’re all in this together feeling sure.

Amy Thomasson: [00:06:39] So we are thrilled that some of our in-person events are back, outdoor events that we do, fundraising events throughout the US. We have nearly 50 walk in rolls across the country throughout the year. So those are fundraising events. But even more than that, they’re about community engagement and bringing local folks together. And you might not have someone else with spinal muscular atrophy in your neighborhood, but you probably have people closer than you think. So trying to bring those folks together and foster connection. Our conference as well. We have about 3000 people and the logistics of putting on a conference for 3000 people where nearly 1000 of them are in wheelchairs is just astounding to me. I’ve been endlessly impressed by the well-oiled machine that is our community support team at Cure.

Lee Kantor: [00:07:32] Sma Now, in your work in corporate world, volunteering probably wasn’t as prevalent as it is in your work today. I mean, there were probably people that were volun told to do certain things and it was encouraged, but it wasn’t really true. Volunteering. How have you seen volunteering? How how, how big of a part is volunteering part of your work today? And how do you kind of find and motivate those volunteers?

Amy Thomasson: [00:08:01] Volunteering personally has been massively helpful for me, and if there was one tip I could provide to young professionals who are just entering the association space or considering it, it would be to volunteer. Find an organization. You can find a national organization like RSA. I’m in the Chicagoland area, so the Association Forum has been a home base for me. Or you can find more industry specific or profession specific type of volunteer opportunities, like I work in marketing, so some opportunities to flex my skill set. But for me, I was really lucky to be walked into and introduced to volunteering by a mentor of mine who’s been heavily involved in volunteering, and from there I just fell in love. I think volunteering solidified my commitment to the association space even more than where I was working at the time. So I’ve had the opportunity to serve on committees, and then when the pandemic happened, I still try to stay connected by doing virtual speaking opportunities, writing articles, and it’s really been helpful. For instance, when I was interviewing for jobs about a year ago. I didn’t have to reinvent the wheel with writing samples because I had volunteered, had written magazine articles or blog posts for different volunteer groups.

Lee Kantor: [00:09:25] Yeah, I think this is one of those kind of secret hacks for young, aspiring kind of people who want to go up that corporate ladder faster is to volunteer, take leadership positions, demonstrate your skills. You know, you start meeting the people that can hire you in your next job by showing how good you are at this volunteering aspect. People appreciate it. I think a lot of young people would benefit from kind of leaning into their associations no matter the size really, because even the small ones were are going to give you an opportunity to really lead major initiatives for that group and people notice.

Amy Thomasson: [00:10:09] Exactly. It’s how I got comfortable with public speaking. I didn’t have a lot of opportunities to do that at that point in my career. And so I started volunteering for speaking engagements. And I remember being on the train going into Chicago for my first speaking engagement and being incredibly nervous, and I kind of developed a mantra for myself. I said, This discomfort is what growth feels like, and now I try to put myself in situations that stretch me a little bit, and I remind myself that that’s in fact, what growth feels like for me.

Lee Kantor: [00:10:44] Yeah, I think I mean, I can’t encourage that’s one of my first things I ask a young person when I’m mentoring them is like, What groups are you part of? You know, how are you participating? It’s not enough to just pay a membership fee and just show up at networking events. You got to really lean into them.

Amy Thomasson: [00:11:02] Right? It is what you put in. You’ll get out what you put in.

Lee Kantor: [00:11:07] Now, you mentioned your background in marketing. Is has marketing different when you’re in a nonprofit as there is kind of are the fundamentals the same? But maybe the execution is different when it comes to marketing in the work that you’re doing today. Like I would imagine the the power of the stories from these individual people are that much more important and they become what kind of is the voice of of the organization? They become kind of helping you define what is needed and what can be done?

Amy Thomasson: [00:11:42] Oh, absolutely. I think one of the difference is and it’s it’s different across roles, comparing associations to nonprofits is associations and nonprofits. We’re mission based organizations, so we tie most things back to our mission. I like to tell people a mission statement is a statement, not a story. So you need more than a statement to attract hearts and minds. So as you mentioned, it’s really about storytelling, highlighting the members of our community because we serve at the pleasure of the members of our community. We exist to elevate them, to help them. So storytelling has been a major initiative I’ve been working on at Charisma. In fact, we even have a stories at Christmas dot org email address and we just invite people passively to send in stories at any time too. And it serves as a great repository for all the different stories of members of our community. But we’re also doing video storytelling, social media, all sorts of things.

Lee Kantor: [00:12:49] Now, is there a story that stands out to you that’s most memorable in the work that you’re doing today?

Amy Thomasson: [00:12:55] We have so many wonderful stories, but there was a woman I interviewed a few months ago. I had met her in person at an event and her tidbits of her story and followed up with her afterwards. She is a mom of several boys, but her son Zachary, has type one SMA, and she was really trying to find inclusive toys for him to play with. He’s in a wheelchair. And so she got a Fisher-Price school bus and there was a character in a wheelchair. But unlike all the other characters and the school bus, the figurine in the wheelchair didn’t walk into place. So when you move the school bus about, he would kind of dash back and forth between the walls of the school bus. And so she went on TikTok and Facebook and said, Fisher-Price, thank you so much for developing these toys, but I really think you could do that much more, and I’d be happy to work with you on that. And product development at Fisher-Price reached out to her and Fisher-Price revamped their airplane and their school bus toys to make them more inclusive, to make the wheelchair figurine fit. And just like all of the other figurines and set her all of those new toys. So she was able to really make an impact at a national level.

Lee Kantor: [00:14:18] And that’s one of those things where, you know, probably at Fisher-Price Price, there wasn’t that representation for someone to say, hey, this isn’t, you know, that’s nice, we’re doing a wheelchair, but it’s not accurate. And this isn’t really their experience. And there wasn’t someone to say that until this woman kind of spoke up and they got their attention to explain how much better it could be. They’ve done 90% of the work. All they need to do is just this little bit more to make it more realistic.

Amy Thomasson: [00:14:48] Exactly.

Lee Kantor: [00:14:51] Now, what is kind of day in the life in your work? Are you spending time, you know, kind of advocating for just more brand awareness for the disease? Are you, you know, partnering with pharmaceutical companies and researchers? Are you trying to serve the families of these folks that are suffering?

Amy Thomasson: [00:15:12] So a little bit of all those things at our leadership level at SMA, we have I have counterparts who are overseeing our conference and our support programs or advocacy programs or fundraising programs and the like. But marketing is interesting, I think, in a lot of organizations, because we touch every single department and work with every single area of the organization every day. So my team and I were joking about this yesterday, but every day looks very different. Right now I’m working on an initiative with Microsoft in partnership with our fundraising team. They October is give month where they match employee donations and encourage volunteerism. So we’re working on highlighting SMA. We’re starting up on an advocacy video series, How to Advocate in Washington DC. We’re working on a website revamp. So there are so many different things we’re doing and every day looks different. But one of my favorite things to do is to sit down and interview members of our community and to learn about their stories and being able to help them share their story. I feel like it’s one of the greatest gifts of my role at SMA.

Lee Kantor: [00:16:30] Because that’s where it comes to life, right? Like a lot of the work that you’re doing is helpful and stuff, but when you hear a person’s story and say what you did improved my child’s life by this, by doing this and that, I mean that’s where the tears start flowing, right?

Amy Thomasson: [00:16:49] Yes, it can be emotionally taxing highs and lows, but it is just such a beautiful gift to be able to see through these individuals that the work we’re doing at this organization is truly making an impact. And I feel like for me, for the first time in my career, I felt like I got a lot of meaning and have gotten a lot of meaning through my volunteer work. But working now directly with the impacted individuals has really made me feel like on fire for my career. It’s truly a career and not a job for me, right?

Lee Kantor: [00:17:26] It becomes a calling where you’re seeing the impact and you’re seeing the the the real effects that it’s just difficult for people who are in that kind of corporate treadmill to really understand. It doesn’t have to be that way. And there are so many organizations that need your skills and that you can really impact people’s lives in meaningful ways, that you’ll actually kind of see the results firsthand. You’ll hear the stories, you’ll you’ll feel the hugs. I mean, it’s really meaningful work. And I wish more people would consider it as a career path.

Amy Thomasson: [00:18:00] Right? Especially with Gen Z, who is more motivated by doing good than a paycheck. Not to say that a paycheck doesn’t matter, but in having impact and meaning in their careers. I can think of no better space to serve than the association and nonprofit space. And what I love about it is I feel like it’s a place where diverse individuals can thrive, where you can explore different career options. I’ve worked in marketing, I’ve worked in membership, I’ve been an executive director and worked in the governance space and all of those things. You can move more flexibly through all those different areas of a business. I feel like in the association space.

Lee Kantor: [00:18:46] And and those organizations, a lot of them are hungry for talent. I mean, this is a chance to really accelerate your career if you want to.

Amy Thomasson: [00:18:55] Very much so. I really hope that more young people coming out of colleges and universities will consider this space and we’ll look to find mentors in this space. That’s really what’s helped me advance my career and grow my skill set. A friend of mine calls it her or her kitchen cabinet and build a group of advisors. I have an association Women’s Network, where six of us get together virtually and candidly talk about career opportunities and career challenges. I have several mentors that I can call up or email that will be responsive and helpful. And so I think that’s another tip I have is just find a few individuals who can help you grow, who can advise you, who are outside of the organization where you currently work.

Lee Kantor: [00:19:49] Right? And if there isn’t an official group, just, you know, be the change you run the world and start your own group.

Amy Thomasson: [00:19:56] Exactly. The women’s network I’m a part of is not an official group. It’s a few of us who had a hunger for deeper conversation and got together and and made this informal women’s circle.

Lee Kantor: [00:20:09] So what do you need more of? How can we help you for cure? Asthma?

Amy Thomasson: [00:20:14] Well, I would love for. We are going into our year end campaign and shortly and, you know, cure asthma. Asthma is a rare disease. So we don’t have the visibility sometimes of a larger organization. Like, for instance, it’s Breast Cancer Awareness Month, and all causes are worthy. But if you want to make a true impact for a really wonderful community, these people are the coolest people I’ve ever met. They just they are so much fun. They have such great stories. If you want to make an impact, you can go to cure SMA dot org. We have a donate button and any amount is helpful. We even have a fundraising program called $5 Fridays where we ask you to forego your Starbucks for the day and donate $5 to cure asthma because every dollar has an impact.

Lee Kantor: [00:21:08] Well, Amy, thank you so much for sharing your story today. You’re doing such important work and we appreciate you.

Amy Thomasson: [00:21:14] Thank you so much, Ali. It was my pleasure.

Lee Kantor: [00:21:16] And that’s cure Smaug, if somebody wants to connect or learn more.

Amy Thomasson: [00:21:21] Yes.

Lee Kantor: [00:21:22] Well, thank you again for sharing your story. Thank you. All right. This is Lee Kantor. We’ll see you all next time on Association Leadership Radio.