Patients with Friedreich’s Ataxia Are Fighting Back

Friedreich’s Ataxia impacts one in every 50,000 people within the United States. This neurological disorder can impact people of all ages but typically starts in childhood. The disease ravages the body to the point that most people only live ten to twenty years after being diagnosed before they need help of a wheelchair and eventually become incapacitated. This is a terrible way to live, and Dr. Robert Dean has been working with the Friedreich’s Ataxia Research Alliance (FARA) to help find a cure.

Recently, several people diagnosed with the disease have decided to fight back. Rather than being held down by the disease, they are stretching the boundaries of what it means to be someone diagnosed with it. In so doing, they are raising needed awareness and funds for the cause.
Barry Rice, a 34-year-old man from Ireland, has participated in putting together the first race for Friedreich’s Ataxia in the area. Cycle Ataxia will take place on August 10th in Ashbourne, and Mr. Rice is hoping that 500 cyclists will participate. He will be on hand in his wheelchair, participating in the event as much as possible. He was diagnosed with late onset Friedreich’s Ataxia and is able to do more things that many people who suffer from the disease. Still, he is confined to a wheelchair and has difficulty doing simple tasks like tying his shoes. He wants to raise awareness so that others suffering from the disease know they are not alone, and more money can go towards research.

The Fryatt family will be climbing Mt. Kilimanjaro this October to raise awareness for the disease. This would be a feat in and of itself but is made more so by the fact that Iain Fryatt has Friedreich’s Ataxia. Climbing a mountain would seem out of reach for most people suffering from a neurological disorder but the Fryatt family is determined. He will be using a Mountain Trike to ascend the mountain. The device will allow him to steer using a lever, and it will be the very first time someone has attempted to climb Kilimanjaro using one. The climb will take them over a week, and they are hoping to raise over $10,000 for the climb. The money will then be given to research.

Both Barry and Iain are not letting Friedreich’s Ataxia slow them down or define their life. They are true heroes that are committed to using their abilities to help others suffering from the disease. Instead of focusing on what they cannot do, they are focusing on what they can do.
As a humanitarian and physician, Dr. Robert Dean believes in the power of joining together to support a cause. Since working with FARA, he has witnessed money going into research with clear results. They now know what causes Friedreich’s Ataxia and are testing ways to implement a cure. There is still a long ways to go but with scientists, community leaders, patients and physicians like Dr. Dean working together, anything is possible.