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Rare Genetic Disorder Fundraiser in Alamo this Sunday

Danville mother starts foundation to help daughter suffering from Lafora.

Cheryl Bigman

Danville resident, Chelsea Gerber, was a normal teenage girl. She played soccer, loved to dance, and had just started attending Monte Vista High School when everything changed. At age 14, Chelsea had her first seizure and was later diagnosed with Lafora. She is now unable to walk without assistance, can only receive nourishment form a feeding tube, and requires round-the-clock care.

Lafora is a form of epilepsy resulting in tremors, seizures, and loss of cognitive ability. It is a degenerating disease, which results in eventual death. The genetic disorder is extremely rare with only 200 reported cases worldwide, affecting those in late childhood to early adolescence. There is no treatment to prevent the progression of this disease, and very little research has been done.

The Gerber family was devastated by Chelsea’s diagnosis—having to see their healthy, young girl slowly deteriorate from the disease. Feeling hopeless and powerless, Chelsea's mother, Linda, took matters into her own hands and started the Chelsea’s Hope Lafora Research Foundation. Formed over a year ago, it is the first foundation in support of Lafora research, says Linda. “There are support groups for parents of Down Syndrome, but Lafora parents didn’t have anywhere to go. Creating the foundation has helped create a supportive network with everyone affected by Lafora.” All proceeds for the foundation are given to a research team working at UCLA.

Chelsea’s Hope Lafora Research Foundation is hosting their first fundraising event at Forli Restuarante in Alamo on Sunday, May 17th, 1 p.m.-4 p.m. The event costs $75 per person and features a photo exhibit of others all over the world inflicted with the disease. There also will be a presenation by UCLA’s top researcher Antonio V. Delgado-Escueta and two of his colleagues on the latest Lafora research.

Linda talked about the goals she has for Chelsea’s Hope Foundation, “I want to help connect people affected by the disease, educate others about Lafora, and help raise money for research.” It looks like the foundation is off to a wonderful start.

For more information or to donate, visit chelseashope.org or e-mail chelseashope@gmail.com. To attend the fundraiser, call Cheryl Adler at (925) 485-9098.