When she was 2-and-a-half years old, Charlotte Colella was diagnosed with limb-girdle muscular dystrophy type 2C, or LGMD2C. The rare, genetic disease gradually weakens the muscles she needs to walk, eat and breathe.
Over the years, Colella has learned to adapt, but some activities are still difficult for her.
“I can never keep up with my friends unless they slow down for me,” she said. “I can’t be friends with a lot of people because they ignore me when I ask them to slow down, which is really hard.”
Now 11 years old, Charlotte Colella and her mother, Alexa Colella, are rallying the community to help fund research into this uncommon form of muscular dystrophy.
The two are organizing a fundraiser at Fire Doll Studio in Champaign on Tuesday, Aug. 19, to support the first U.S. clinical trial for limb-girdle muscular dystrophy type 2C, or LGMD2C.
The fundraiser will benefit the Dion Foundation, which is sponsoring the clinical trial through a partnership with a French pharmaceutical company. Two patients have already been dosed, but funds are needed to advance research and help others.
“I hope they take away is that these diseases are not, like, hypothetical,” Charlotte Colella said. “They’re not something to be ashamed of. They’re something that we should help … give those people that have disabilities lives back and support the local community while doing it.”
The event will also feature 40 candle-making spots. Each candle will cost $45, and $15 from every purchase will be donated to the foundation.
Jewelry from local businesses will be available for purchase, and a percentage of those sales will also be going to the cause.
The family said visitors will be able to enter giveaways for a chance to win prizes from local artists, including 3D floral artwork from Charlotte Colella.
In addition to raising money, Alexa Colella hopes to bring attention to understudied diseases like her daughter’s.
“There are a ton of people with rare diseases that aren’t getting treatments, not because it’s not possible to treat them, but because there isn’t money for treatment,” she said. “I sort of fundamentally believe that if we can do something to help people with a disease that they didn’t ask for, we should.”
The fundraiser will start at 6 p.m. and is free to attend.