Degenerative disease is badly in need of a cure
By David Leone
WAKE FOREST — Some diseases can’t be cured. Alison Price was diagnosed four years ago with one such condition, Friedreich’s Ataxia, a degenerative, life-shortening, neuromuscular disorder. Alison is 17.
On Saturday, Oct. 29, runners and walkers will gather at Run-n-Tri Outfitters, on Wake Forest’s Retail Drive, for the Run For You 1-mile and 5K run/walk and 25-meter dash for kids. The run benefits two local causes, including the Friedreich’s Ataxia Research Alliance (FARA) in honor of Alison Price.
All the money raised goes straight to research that ataxia sufferers desperately hope will help them and others like them.
“Currently there are no treatments or cure for FA,” according to Alison’s mom, Wendi. “However, there is a considerable amount of research being done, including that by two of her awesome doctors.”
FA is the most common ataxia, affecting 1 in 50,000 people. First identified in the late 1800s, it nonetheless took until 20 years ago for researchers to tie it to a gene, according to Wendi. As a result, research have a long way to go for a cure.
It is brutal to the body. Common side effects of the muscle and nerve degeneration include losing balance, thickening of the heart, depleted thyroid hormone, diabetes, hearing and vision loss, difficulty speaking as jaw muscles weaken, and other issues.
“It takes two heart medicines to prevent arrhythmia,” Wendi said.
This month, Alison went under the knife to have rods inserted into her spine to counteract the scoliosis many FA victims suffer from. It’s a lot for anyone to go through, much less a child.
Alison is a normal teenager. She’s a student at Heritage High, likes to hang with friends, is fond of Pokémon and photography, and is a big animal lover.
Her mom describes her as a kind of animal whisperer: “She takes her bunny Bentley to school. She calls it her therapy animal.”
The rabbit doesn’t jump away — ever.
But the illness has taken its toll. Alison is confined to a scooter or wheelchair. She has to wait for friends to come to her. Visiting people and places requires transport — and careful planning. She lacks the ability for spontaneity that other teens enjoy. Though the staff and students at school treat her very well, her social life is limited. She suffers from bouts of depression and anxiety.
Every day, every dollar counts
In the four years since Alison was diagnosed, the family (Matt, Wendi, Alison and Shane) have traveled all over trying to learn about the condition, and share their story with doctors who research and treat ataxias. They’ve attended symposiums, conferences, and held one-on-ones with researchers.
“We’re really struggling to see support in the area grow,” Wendi said.
That’s why days, weeks and months count and why every penny they raise is important. The family, their friends and supporters have raised $130,000 so far for FA, much of which Wendi says has gone straight into the petri dishes of medical researchers looking for a cure, searching for treatment therapies.
There are several labs in the Triangle area doing research. One is trying to create a way to modify chromosomes and remove the extra DNA sequences that characterizes the majority of FA patients.
“They have figured out how to do it in a dish,” Wendi said.
Taking that to the human level and determining if it will reduce the degeneration will require a lot more work.
Two of Alison’s doctors have research grants that are directly funded through FARA from fundraisers such as the Run For You, Wendi said.
“They work tirelessly,” she praised. “They’re really wonderful.”
Race, raffle, rally for the cause
The Run For You race is sponsored by Miles to Smiles, a Wake Forest based organization run by Rebecca Warriner that fundraises for various causes.
See milesintosmiles.com to register, volunteer or donate. (If donating, do so with the team name, Team Alison Price for FARA).
Or you may write a check to FARA with Alison’s name in the memo, and send it to the Price family at 1352 Heritage Heights Lane, Wake Forest, N.C. 27587.
The 1-mile run/walk is at 8 a.m.; 5K run/walk at 8:30 a.m. and 25-meter dash (ages 6 and under) at 9:15 a.m.
Wendi will be selling raffle tickets at the race, with prizes donated to the cause from local businesses. The grand prize is a bicycle.
Some local businesses have been raising money on their own. The other fundraiser is a Nov. 12 cornhole tournament at ACE Hardware in Rolesville, sponsored by Mark and Marissa Menezes of Heritage Living Magazine.
To learn more about Alison and FA, see her website at tiny.cc/curefaforalison.