ALAMEDA -- An Alameda family with two children affected by a rare disease is participating in a fundraiser Saturday in a special way.
Father George Penston and daughter Izzy, 13, will bike in Ride Ataxia NorCal 2014 near Davis. The fundraising bike ride aims to raise financial resources and awareness of Friedreich's Ataxia, a degenerative neuromuscular disorder now lacking treatment. For the research benefit, Izzy will use a custom-made bicycle.
"I think Friedreich's Ataxia Research Alliance is unique because they are working really hard to cure FA, and everyone that works there is awesome," said Izzy, a seventh-grader at Lincoln Middle School. "I would love for (the group to find) a cure for Friedreich's Ataxia and would be very happy if a drug could stop the disease from progressing because then my brother, Owen, would never need a wheelchair."
Izzy sees specialists at UCLA as part of a study sponsored by Friedreich's Ataxia Research Alliance. She also receives care at the Muscular Dystrophy Association clinic at UCSF.
"Izzy was tested at age 9, when things were not quite right," said mother Zoe. "The illness is so rare." It affects about one out of every 50,000 people worldwide.
"Of course, when Izzy was diagnosed, we were devastated and in shock," Zoe Penston said. "We had no idea what to do. But she asked how they were going to fix her and how she could help. Her daughter began raising money within the first month of her diagnosis, Zoe Penston said.
"We had a bake sale in the front yard and made a couple hundred dollars," the mother said. "It's really because of her saying this is what we should do."
She estimated that the family has raised $45,000 to date for the cause.
"We will just keep doing it until they there's no need to," Zoe Penston said. "Izzy is really excited about the ride and has been training at the Bay Area Outreach and Recreation Adaptive Cycling Center in Berkeley, which is an amazing place."
Alamedans have been "very supportive of the family's fundraising efforts," Zoe Penston said. "It's been extremely important to us and we are really grateful for everyone's support. Just this month, kids and parents organized a bake sale at Edison to raise money, as they do every year."
To donate in support of the Penston family's cause, go to the Ride Ataxia website at http://rideataxia.kintera.org/faf/search/searchTeam.asp and click on Team Zowie.