Naperville garage sale helps fight spinal muscular atrophy
Angie Lee's life started like so many of her friends' did. She made her parents proud, learning to sit and to crawl and to eat those first foods.
It wasn't until it was time for Angie to walk that her parents suspected there was something different about her. Despite her previous physical developments, Angie never tried to walk.
Ultimately, doctors determined Angie has spinal muscular atrophy, a progressive genetic disease.
The diagnosis means Angie doesn't produce a protein needed to send signals from her spinal cord to neurons in her body. The disorder means Angie can't move her body well and her muscles are weaker than her friends' are.
Still, she's relatively lucky. The condition can be fatal as it inhibits voluntary muscle movement - everything from crawling and walking to head and neck control to swallowing.
Angie sees a battery of medical specialists and therapists. With their help and a power wheelchair, Angie keeps up with her fifth-grade classmates at May Watts Elementary School in Naperville. Her classmates know her as a bright, happy kid who loves school, reading, music and crafts.
Her personality and enthusiasm have inspired friends and neighbors to join together as Angie's Hope to fight SMA in her honor. On Saturday, Sept. 19, the Garage Sale to Cure SMA will raise money for Families of SMA, based in Libertyville, which funds research.
"We will keep raising money until a cure is found," says Kyra Scadden, Angie's best friend who suggested starting Angie's Hope. Her mother, Kris Scadden, now heads the organization.
Researchers may be close to a cure. Scientists have identified the gene that causes SMA as well as a "backup gene" that could resolve the problem. The National Institutes of Health predicts a cure could be found within five years with sufficient funding.
Karen Pomazal, an Angie's Hope volunteer, discusses the Garage Sale to Cure SMA.
Q. What is your mission?
A. To raise money to find a cure for spinal muscular atrophy, a rare genetic disease affecting Angie, an energetic and cheerful fifth-grade student in Naperville.
Q. How do you work toward accomplishing that goal?
A. We will have the third annual Garage Sale to Cure SMA. The past two years have raised a total of $21,900 and our community is committed to keep going until a cure is found.
Q. Who do you serve?
A. Children affected by SMA.
Q. When and why did Angie's Hope start? How has it grown?
A. The organization started three years ago when Kyra Scadden, then in third grade, was concerned about her best friend's SMA. Kyra decided to have a garage sale and donate the proceeds to SMA research. Word spread quickly through the community, and volunteers, donations and shoppers organized en masse and raised more than $9,000 the first year. The second year raised more than $12,000.
This year's sale will include eBay auctions and a vendor sale of items such as Tupperware, Pampered Chef, Lia Sophia and even a private-label coffee called Angie's Tanzania Hope from local organic coffee purveyor Emerald Frog.
Q. What kind of successes have you had?
A. Raising nearly $22,000 and giving 100 percent of it to charity.
Q. What challenges does Angie's Hope currently face?
A. We are in need of volunteers, donations of items and cash, and of course shoppers on Sept. 19.
Q. What do you wish the community at large knew about Angie's Hope?
A. This is an all-volunteer organization, rallying around a neighborhood girl.
Q. How can readers get involved?
A. Donate items to sell. Drop off items Sept. 14-18 at 1401 Ambleside Circle, Naperville.
Donate on the Web. Go to angieshope.org and make a monetary donation.
Shop. Come to the garage sale Sept. 19 to take advantage of great deals, enter the raffle and silent auction, enjoy a free cup of organic coffee and say hello to Angie and Kyra. You can also shop online at the Sale to Cure SMA's eBay site and Vendor Fundraisers via angieshope.com.