A dream, a lemonade stand, and the importance of giving back

As I stared at the rolling green hills before me, I wondered what 8-year-old Alyssa would have thought of this moment. It was my nonprofit organization’s first charity golf tournament in almost six years, though the annual events dated back to 2010. However, the story began long before we teed off on the green with a girl, a dream, and a lemonade stand.

When I was little, I watched shows like “The Rosie O’Donnell Show” and “Oprah” and was in awe of how much these hosts gave back to others. I saw how moved the recipients of their kindness were, and I wanted to do the same somehow. So, while little girls my age played with Barbies and makeup, I set out to serve others. What better way to do that, I thought, than to start by giving back to my spinal muscular atrophy (SMA) community.

At the time, SMA wasn’t very well known. Treatments weren’t readily available like they are today, and clinicians in my area had never heard of this disease before. Resources like conferences or the internet didn’t exist yet, either. It was the late 1990s, and there was still so much work to be done in terms of creating a better future for SMA.

So I had a goal of raising $100. To a child, $100 could change the world. I was convinced this amount of money would not only find a cure for my disease, but would also be enough to live filthy rich, fly to the moon, and maybe even buy a pony. It felt like a far-out goal, but I was willing to do anything to get there.

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Shaping the future of SMA

My earliest efforts started with a lemonade stand. I’d rally the kids in my neighborhood to help me sell lukewarm lemonade to passersby on hot summer days, and all the earnings would go toward SMA research. There was only one problem: Selling lemonade at 50 cents a cup would take an absurd amount of time to reach my goal.

So I pivoted. With help from my mother and occupational therapist, I came up with the name Working On Walking and decided to channel my love for art by drawing and selling greeting cards under this name. From there, my dream of raising $100 quickly multiplied into thousands of dollars that I donated to Families of SMA (now Cure SMA).

Fast forward two decades, and I sat at the check-in table of my nonprofit’s recent charity golf tournament, taking it all in. Looking around, I couldn’t help but remember being that little girl.

I wanted nothing more than to help people and be a part of the change for those with SMA. I had a small dream of making a big difference in the world. While I was busy getting my hands dirty chasing this dream, I discovered that passion and success can only go together when the kindness of strangers is met with the willingness to believe in something bigger than yourself.

August is SMA Awareness Month, a time when I often reflect on and celebrate all the disease breakthroughs made in my lifetime and the people who led us here. The trailblazers who ignited the way, the researchers who dedicated their lives and their work to SMA, the doctors, caregivers, and families who supported one another — they were once strangers who believed in something bigger than themselves. Doing so led to the promising future that we’re living in today.

My story is only a minute fraction of the larger picture. Nevertheless, I’m grateful for every dollar raised and every person who has contributed to my cause and helped shape the future of SMA. It is my biggest honor to play even the smallest of roles among those making an immeasurable difference. After all, their work is driven by hope and compassion, leading to change that 8-year-old me never imagined.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.