At 15-months-old, Angie Lee was diagnosed with spinal muscular atrophy, or SMA, a neuromuscular genetic disease.
“To put it simply it just weakens all the muscles in the body, it has to do with the fact that I’m missing a gene,” explained Angie.
Due to her SMA, Angie uses a wheelchair to get around, something that helped start a friendship and spur an idea for change over ten years ago.
“Our friend Kyra, she thought that I was a robot when we were in second grade, so when she asked why I was in a wheelchair, the moms explained it to her and she wanted to raise pennies to find a cure,” said Angie.
This began “Kyra’s Idea: Angie’s Hope” an effort to raise money for Cure SMA, an organization that funds comprehensive research for SMA treatment and care.
“It literally started with a penny jar, where our goal was to raise $200. But the entire community heard about it and jumped in and helped out and so we held a garage sale the first year, and it raised $9400 within that first year,” said Angie. “So then we thought, ‘oh wow, this is something big, we should keep doing this,’ so then we’ve been hosting an annual event ever since.”
Since that first event in 2007, Angie’s Hope has hosted a fundraiser each year. From garage sales, to big ball soccer matches, the same core group of friends has helped plan and execute each event.
As the core team is preparing to graduate high school, this tenth and final fundraiser has an extra special meaning.
“We wanted to do the theme “PROMise to Cure SMA,” kind of a prom theme, but also since we’re going off to college, we’re promising to continue to fight this disease,” said Angie.
A fight they’ll take on at colleges across the country, by spreading awareness of SMA and sharing Angie’s story.
“Whenever I’m in a conversation I love talking about Angie so it always comes up, so yeah, it’ll definitely come up in college because it’s such a big part of my life,” said Sarah Miranda, a co-founder of Angie’s Hope.
“Angie’s my best friend and it just feels like a huge accomplishment to be able to help her out. She’s such a nice and generous person and she really deserves everything we’ve done for her,” said Erin Heniff, a co-founder of Angie’s Hope.
Over the past ten years, Angie’s Hope has raised over $240,000 to fund SMA research.
In December the FDA approved the first ever treatment for SMA called “Spinraza.”
Naperville News 17’s Evan Summers reports.
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