Learning from Philadelphia: What We Can Do As The Patient
Ride Ataxia Philly on Sunday, October 12th and the 7th Annual Friedreich’s Ataxia Symposium hosted by Children’s Hospital of Philadelphia (CHOP) the following day on Monday, October 14, 2014 was a positive and inspirational time for the FA Community. As the cyclists anxiously lined up to ride 5, 10, 25 or 50 miles on a beautiful Sunday morning, all were encouraged with the knowledge that every pedal made is a step closer to a cure. Ride Ataxia Philly hosted its 6th annual event this year in Blue Bell, PA with great sponsors such as Bonefish Grill, Carrabba’s Italian Grill and Outback Steakhouse. There were 475 riders and $215,000 was raised for awareness and FA research!
The following day was filled with updated scientific news and research for possible treatments of Friedreich’s Ataxia at the 7th Annual FA Symposium. Please read below for responses from a few members of the FARA Ambassador Program who attended these events who were left with the power of what to do next as the patient..... Fifteen years ago, I went to Philadelphia to participate in a study by Dr. Lynch and Jen Farmer. They were studying how our muscles use oxygen during exercise and if FA affects our sense of smell. The gene that causes FA had just been identified and there was not very much information about the condition. At the symposium, we learned about several clinical trials going on and many more upcoming trials. Wow! What a difference in such a short time! I can really understand the importance of registering in the FARA Patient Registry now. FA patients are needed to participate in clinical trials when they become available. When we are enrolled in the registry, it is easier for the clinicians to find FA patients. It also keeps FA patients informed on trials. Registration is easy and just takes a few minutes, so register today! www.curefa.org/registry.html
My favorite part of attending the symposium in Philly simply hanging out with FAmily and being around the people I consider close to me. Aside from that, this year in particular was very inspiring. I met so many new people living with FA and met new researchers and doctors who are interested in helping us to find a treatment for the disease. I spent a good part of one evening chatting with Mary from Horizon Pharma, which was there all the way from Ireland for the symposium. I am so excited to see how far we've come! I attended the symposium a few years ago, when not half the number of people was in attendance. We are kind of a big deal!
The weekend in Philadelphia this year taught me what I can do as the patient to help speed up the process to cure FA. Sure, spreading awareness and continuously raising funds for research is the most important way. But don’t forget to ask every FA patient you know to sign up for FARA’s Patient Registry and keep their information updated. This is the fastest and easiest way to reach patients for recruitment to clinical trials or for treatment discoveries. And while you are at it, sign up for the FARA newsletter for updates on the FA community and scientific news.
The FA community not only consists of patients and their families and friends, but an endless amount of support from researchers, doctors, companies, and many organizations worldwide. The FA Symposium hosted by FARA and CHOP, and fundraisers throughout the year, Ride Ataxia being a key player, has empowered me in many ways to help to find a cure. This year’s symposium was especially important to me because I was given the opportunity to speak about home modifications. Between my architectural background and my diagnosis, my goal is to offer both a design perspective and a personal one. FA helped define my career choice to focus on accessible architecture geared towards advocacy and help in the FA community.
I believe a cure will come. My belief in a cure grew simply because I was meeting others face-to-face that believed it and were going to make it happen. I am always searching for courage and more ways to cope. Every member of the FA community I meet gives me a piece of hope to inspire me to keep moving forward. I may not have the money (yet!) to pay for research to find a cure, or medical degrees to DO that research, but I can and will call on everyone to help. Just by meeting each other we can enable each other to make a cure happen faster than we could ever predict.
Making an effort to speak with researchers, shaking the hands of pharmaceutical company representatives, smiling alongside FAmily as we cheer cyclists to the finish line, sharing a laugh with CHOP neurologist Dr. Dave Lynch and FARA president Ron Bartek – these are the moments I have learned how committed everyone is to finding the cure. It is never too late to try.
The Ride Ataxia and Symposium weekend is dear to my heart because it was one of the first series of events which introduced me to FARA and those affected with Friedreich’s Ataxia almost four years ago. What touched my heart the most at Ride Ataxia was finally being able to connect and meet new FA families and FARA Ambassadors face to face after speaking via webinar meetings for over a year! We all stood at the finish line cheering on the riders and I think that was the most powerful moment I have ever experienced. Gathering together and showing our appreciation for these 475 riders has made an impact on both their lives and ours.
The symposium has left FA patients like me with hope that there will be a treatment soon. There were so many researchers and scientists present speaking about upcoming clinical trials for therapies. It is important to join the FARA Patient Registry in order for these clinical trials to take place in a quicker manner. www.curefa.org/registry.html
I think I can speak for everyone in the FA Community that we all left the symposium that day with a feeling of faith and optimism. Being able to speak with the researchers and scientists one on one has shown they are our side t battle this condition. It’s reassuring to know we are not alone and TOGETHER WE WILL CURE FA!
Ride Ataxia has raised both awareness and over $2.5 million in support of FA research grants in just seven short years thanks to Kyle Bryant, FARA and so many others for their dedication and tireless efforts! Besides Philadelphia, Ride Ataxia also holds events in Seattle, Northern California, Dallas, Chicago and Orlando. So be on the lookout for dates for next year!
Also be sure to attend the 8th Annual Friedreich’s Ataxia hosted by CHOP if you are given the opportunity. It’s a great way to be in the know of scientific news and to connect with FAmily, all with the common goal to find a cure!