At age 17, Kyle Bryant was devastated when he was diagnosed with a rare, debilitating, life-shortening disease called Friedreich’s ataxia (FA). However, Kyle took this bleak situation and turned it into an opportunity to provide hope to the FA community and empower others, riding his recumbent trike thousands of miles and raising millions for FA research. Now Kyle shares his outlook about how to turn adversity into opportunity in his keynote speeches. Kyle Bryant, who is a Patient Advocate, Ride Ataxia Founder & Director, Friedreich's Ataxia Research Alliance (FARA), will deliver the closing keynote session at the 2016 iBIO IndEx.
The documentary, “The Ataxian,” as well as your TED talk, draws attention to the patient side of Friedreich's ataxia (FA). How can patients get involved in finding new treatments for FA?
The most powerful way to get started is to get informed. When you’re first diagnosed with FA or any rare disease, your mind instantly goes to infinity. You hear things like you’re going to be in a wheelchair soon, you’re going to lose all ability to take care of yourself, and you’ll likely die a premature death due to heart disease. Those are some of the only things you hear at first. You start thinking you’re going to die tomorrow. Then you meet other people, get informed, and begin to construct the actual reality of the situation. The fact is, you’re not going to die tomorrow. People are living with the disease who are incredibly successful and funny and intelligent––just like you hoped you will be. It all really starts with getting informed and meeting other people in the community so you can all move forward together.
For the FA community, the most important resource for information is the Friedreich’s Ataxia Research Alliance’s (FARA) website, www.curefa.org. Beyond that, an important resource to connect with people with FA is through Facebook groups, including FARA’s Facebook page. Through these groups, you can see who’s out there, what are they saying, and how they’re dealing with this. Face-to-face connections are also really important to our community, and FARA facilitates these connections through patient symposiums in different locations throughout the year where people can come hear about the latest breakthroughs in science and meet each other.
How do people with FA learn about clinical trials?
As far as getting involved in FA clinical trials, curefa.org is the place to start. You can see all the clinical trials for FA that are currently open. And you can also start to look at some of the trials that might be coming in the future based on the research that is going on. When patients register on the FARA Patient Registry at curefa.org, they will hear about trials that they might be eligible for through an email sent to their inbox. Clinialtrials.gov is also a really important site because you can find out more details, and it verifies the current status of all these trials.
For people with rare diseases, in general, I think the most important resource is the patient groups for that disease. The FA community is incredibly fortunate that we have such an incredible patient group. There’s always people looking for each other. That’s how FARA began. A few people got together and said we have to do something about this. And it grew from there.
It’s very important to start with your doctor, too, but I also note that not all doctors have even heard of FA before. I’m fortunate that I live by Philadelphia and can see David Lynch, MD, PhD [a pediatric neurologist at The Children's Hospital of Philadelphia and director of the Friedreich's Ataxia Program]. But not everyone has that access to that. So find websites like curefa.org and bring that information to your doctor and also make an appointment with a specialist. We’ve got David Lynch on the East Coast, Sue Perlman [Susan Perlman, MD, director of the Ataxia Clinic at the UCLA Department of Neurology Program in Neurogenetics] on the West Coast and several in between. I think it’s important not only to talk to your personal doctor who knows you but also seek information outside of that.
Can you describe the partnership between patient group FARA and the biopharma industry and how they work together to find new treatments for patients with FA?
Industry benefits from infrastructure and insight. FARA has a collaborative clinical research network where people with FA are regularly seen. These network sites are equipped to do clinical trials. We have over 10 years of natural history data on 850 plus patients. Biopharma gains the benefit of all that data. We also have the FARA patient registry. When a trial is announced, we send an email out to all the people who fit the inclusion criteria and we recruit trials in hours¬¬––not days, not months, not years.
FARA has the biggest scope for insight into the disease, how it behaves, what it’s like on a molecular level, and what it’s like in a person. We have relationships with FA researchers all over the world; FARA connects biopharma to these researchers to provide that insight the industry needs to move forward more quickly.
The Race Across America (RAAM) is widely recognized as the world’s toughest endurance bicycle race. In 2010, you participated in RAAM as part of 4-man Team FARA. The team completed the 3,000 mile non-stop race from Oceanside, California to Annapolis, Maryland in 8 days, 8 hours, and 14 minutes. During that intense ride, what inspired you and your teammates to keep going? What inspires you to continue your efforts to raise awareness and funds for FA research?
Without a doubt, it’s the FA community that pushed me during the race. I’d be riding my bike at 2 a.m. in the rain in the middle of Indiana and I would think of the emails that I’ve received from a mother of a girl who has FA. She said, “I look online and I can’t find any hope, but your team brings our family hope.” Those are the things that really drive me. It’s the community supporting each other in this journey that we take together. I received that email right at the start of the race and then almost to the end of the race, about 100 miles from the finish line, I met a 10-year-old boy who came up to me and said “Hi, I’m Jack. I have a trike, too, and your team has inspired me to ride 5 miles in my neighborhood for FA research.” That really hit me, and our whole team. We’re so inspired by this little boy who’s telling us that he’s inspired by us. It’s mutual inspiration. It’s the community that really drives everything forward.
Are there any recent breakthroughs to come out of FA research?
I feel like a lot of the time progress is judged on an all-or-nothing scale. Do you have a cure or not? I think it’s important to look at the incremental steps that we’ve made. All the scientific discoveries along the way lead us to understand more about the disease so we can more effectively go after treatment. The FARA Treatment Pipeline (http://www.curefa.org/pipeline) is a visual representation of the progress in the different approaches to treating the disease. It is exciting to see the growth of the pipeline both in number of approaches as well as how far they are through development, especially when you compare it to a treatment pipeline from 10 years ago. It is important to us to recognize all the incremental discoveries, successes, and failures that bring us closer to a treatment and a cure.
What is your hope that the medical community will be able to do for patients with FA?
The ultimate goal is a treatment and a cure. It’s the holy grail. But, in the meantime, I talk with my friends who have FA, and we all say that anything that helps with symptoms (i.e., manage fatigue, balance, and coordination) would be huge for quality of life. So I don’t want to judge progress of research and development on cure or no cure. That’s the short-term and long-term vision I have on how science and medicine can help somebody with FA.
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