PLAINFIELD – One of the first things someone with Friedreich’s ataxia notices when they start to show symptoms is trouble walking, or difficulty with coordination and balance.
Heather Bonacorda, mother to Blake, 21, and Sophia, 20, noticed this with both her children. Blake, who used to be a competitive gymnast, suddenly “couldn’t walk across the room without holding onto the furniture,” Heather said.
Blake was diagnosed in November 2016. That December, Sophia also was diagnosed, but she said first noticed symptoms at age 12.
Bonacorda, her husband and Sophia will participate for the first time in the Ride to Cure FA, or RideATAXIA, on Sunday. They will be in a team of 12 and tackling the 12-mile bike route.
At first, their goal for fundraising was $1,000, but they have raised nearly $26,000 for the Friedreich’s Ataxia Research Alliance and expect to raise more money by the day of the event.
RideATAXIA Chicago will be occurring for its sixth year at Channahon Central Park at 24856 W. Eames St., and offers 1-, 4-, 12-, 27- and 50-mile cycling routes.
“I wish more people knew that it’s right in their neighborhood. It’s right in your backyard,” said Bonacorda, who has lived in the Plainfield area for 20 years. She didn’t know about FA or the Ride to Cure FA event until her both of her children were diagnosed.
According to the National Institute of Neurological Disorders and Stroke, FA is a rare genetic disease that causes damage to the nervous system and movement problems. FA usually begins in childhood and leads to difficulty moving, a condition that worsens over time. Despite its rarity, it is the most common form of hereditary ataxia.
FA also impacts speech, hearing, diabetes and life-shortening cardiac disease, Bonacorda said.
Both parents must carry the defective gene for their children to be impacted. It is a one in four chance that children of two carrier parents will develop FA, and a one in two chance of inheriting the abnormal gene that they could pass along to their children, according to the National Institute of Neurological Disorders and Stroke.
FARA, founded in 1998, hosts the nationwide Ride to Cure FA every year. It is a program that “welcomes people of all abilities to ride and to raise funds for FARA’s mission to treat and cure FA through research,” according to FARA’s website. FARA provides information and resources to patients and their families.
“It’s been a lifesaver,” Bonacorda said about FARA. “You feel like you’re not the first one to go through this.”
The fundraising event was first started by Kyle Bryant in 2007, when his diagnosis at age 17 and his love for biking led to a 2,500-mile bike ride from San Diego to Memphis completed by him and his family. RideATAXIA has raised over $5 million in support of FA research in the past nine years.
Becky Young and her family helped set up a RideATAXIA event to run in Channahon after hosting her own fundraisers at their farm. Her youngest daughter, Emily, was diagnosed in 2008 when she was 12.
Emily had her spine fused when she was 13 from scoliosis, and made it through high school walking. She now uses a wheelchair to get around. Emily will be a senior at the University of Illinois in the fall, and will graduate with a degree in human development and family studies.
“It’s a mental and emotional thing too,” Young said. “You know there are changes coming and you have to be able to deal with it, and be able to accept it.”
Since Emily’s diagnosis, raising money and awareness of FA has been a family effort. Young’s other daughter, Jamie, has been working for FARA for the past seven years and does a lot of work specific to RideATAXIA.
The goal is to raise $100,000 this year, according to Young. Last year, they raised $80,000.
“As a parent, you just feel such an urgency, you feel a strong passion for doing the fundraising and promoting the awareness in the hopes that it will push the research that much faster,” Young said.
FA does not impact cognitive function. It’s something Bonacorda wished more people realized.
“They’re still them,” she said.
“The biggest thing is, just because I have it doesn’t mean that I am different than I was. It doesn’t define everything I am,” said Sophia, who will be attending Arizona State University in the fall. “It’s part of us, but it’s not all of us.”
IF YOU GO
WHAT: Ride to Cure FA, or RideATAXIA
WHERE: Channahon Central Park, 24856 W. Eames St.
WHEN: Sunday. 50-mile ride starts at 7:30 a.m., 27-mile ride starts at 8:30 a.m.,12-mile ride starts at 9 a.m. and the 4- and 1-mile ride start at 10 a.m. Lunch will be served from 11 a.m. to 1 p.m.
COST: It is $50 to sign up without the $200 fundraising minimum, and $30 to register with the $200 fundraising minimum. There also is a virtual cyclist option, which is $15 for those who will not cycling in the event but would still like to fundraise. Lunch is included in registration price.
ETC.: Lunch is provided by Outback Steakhouse, Carrabba’s Italian Grill and Bonefish Grill.
INFORMATION: Call Friedreich’s Ataxia Research Alliance at 484-879-6160.