The Search for the Cure of Friedreich's Ataxia

Funding for Friedreich’s Ataxia has continued to increase since 2016, but doctors and researchers still require more money in the search for a cure.

Friedreich's Ataxia is a rare life-shortening neurodegenerative movement disorder. Overtime, patients will lose control of their fine motor skills, their speech, and will eventually develop heart disease. The biggest issue of Friedreich’s Ataxia, or FA, is that there is currently no treatment or cure. Because the disorder is so rare, there has been very little funding for FA which has kept researchers from treating patients. Finding a treatment for this disorder would not only help prolong the patients lives, but would be a start into finding a cure. One of the best ways to grow funding for a disorder like Friedreich’s Ataxia is for doctors, patients, and families to educate others and create a platform for everyone affected by FA. 

According to the curefa.org site, Friedreich’s Ataxia causes progressive nervous system damage and mainly affects the patient’s control over their arms and legs. Most patients will eventually lose the ability to walk and will be confined to a wheelchair. Symptoms of FA usually show up when the patient is around 5 to 15 years old, and is officially diagnosed by age 25. These include loss of feeling in the arms and legs, extreme fatigue and muscle loss, vision and hearing loss, slurred speech and serious heart conditions. Magee McGriff, the Senior Clinical Research Associate and Manager of the FA clinical trial at the University of Southern Florida Clinical Research Department said, “It’s a movement disorder that’s genetic, and over time, it’s a disease that just seems to worsen.” 

If the FDA approves a treatment plan for patients, this life-shortening disorder will work much slower and the symptoms from FA will not take effect on the patient’s body as rapidly. Doctors and researchers are taking small steps towards finding treatments for FA through clinical trials. Patients travel across the nation to take place in these clinicals, hopeful that the drug they are being tested on will one day become FDA approved. According to the freiedreichsataxianews.com site, trials are being created for the search for treatment by associations like the Collaborative Clinical Research Network in Friedreich’s Ataxia, a platform used to share collaborative research and data in beginner clinical trials for FA, the platform needs funding to be able to keep having these trials. 

Friedreich's Ataxia patient and spokeswoman Lauren Riggs has become a spokeswoman for FA funding and research ever since her diagnosis in September 2018. Riggs said, “Dealing with Friedreich's Ataxia, being diagnosed with it, it’s very scary. When your doctor looks at you in the eyes and tells you that you’re going to be in a wheelchair in a couple of years, most people react with that news and think that their life is over, but I have not thought that for a second.”

Lauren’s positivity from her diagnosis and her perseverance throughout her clinical trials have inspired other FA patients to make their voices be heard, says Mcgriff, through a Facebook group message used to create a community with other patients. Lauren has already educated many of her friends and students on the University of Oklahoma’s campus, and her unwavering spirit has brought hope to many people. 

Lauren Riggs has used her voice to bring awareness to FA, and has helped the disorder take one step closer to finding not only treatment, but a cure, says Cassidy Towe, by using platforms like “FA Awareness Day” and “Soonerthon” to teach other people about FA and to increase fundraising for a cure. Towe, Lauren’s sorority sister and “Big sis,” spoke on the impact Lauren made on campus ever since her diagnosis. Towe said, “She never fails to wake up every day, and be grateful honestly for the day she has been given. So she lives every day with an enthusiastic spirit, and doesn’t take any moment for granted, which I find amazing.” 

There are many ways to learn more about Friedreich’s Ataxia and other similar disorders that are without a cure. If you want to get involved or provide funding for research, go to www.curefa.org. Here you will not only learn more about FA, but you can read personal stories like Lauren’s from other patients, family members, and doctors. There are grant programs, clinicals to learn about, and scientific conferences for people to attend to become spokesmen and women for FA funding and treatment.