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FARAFARA Cure FA

RA Philly & CHOP Symposium

 

Five Ambassadors share about one great weekend.... Ride Ataxia Philly & the FA Symposium at CHOP!

I recently went to the Sixth Annual Freidreich’s Ataxia Symposium at Children's Hospital of Philadelphia (CHOP) with my very supportive father! This was our first year attending so we didn’t know what to expect. I was diagnosed almost two years ago with Friedreich’s Ataxia. So we were looking forward to meeting and connecting with new people and obtaining new information about treatments for this rare disease! 

The symposium was very informative between topics of current research of treatments, genetic testing, physical activity and mobility, and perspectives on clinical trials and driving! My dad and I got something out of each topic and left the symposium with new knowledge.

What I got the most out of was the physical activity and mobility, treatment with the Interferon Gamma and Ubiquitin Competitors and the perspectives with driving. I enjoyed hearing the certain exercises and equipment that should be used for mobility by Joyce R. Maring, P.T., D.P.T. Ed.D because I will soon need a walking aid. The Interferon Gamma presented by Robert Testi, M.D. from Italy, really gave me hope for a new treatment. Lastly, the speeches by Kyle Bryant, Dynah Haubert, Erin O’Neil and John Cernosek about driving gave me motivation and inspiration to drive myself!

In one day, I got to learn so much about my disease and meet wonderful people. I can’t wait to go again next year to be with my FAmily again!

Christina

Living in Dallas, Texas, I am a part of making the Ride Ataxia here happen by promoting, gathering up riders, as well as cycling and fundraising for this event. I had the opportunity to attend the Ride Ataxia in Philadelphia this year. I was very excited since this would be my first time visiting with others outside of Texas that are also living with FA. I originally planned on cycling the 25 mile route, but as you all know Texas is a pretty flat state and after seeing the rolling hills, it made my eyes widen and quickly changed my mind to riding the 10 mile route. It must have been meant to be, because I had the honor of riding with numerous FAers. I helped cheer them on as they were completing their cycling goal. Some were first time riders and others were attempting 10 miles for the first time. I had an incredible time and was overwhelmed by everyone’s positive attitudes and perseverance at this event. The ride raised over $200,000 for research, giving our researchers more reason to push harder at finding a cure. It’s so true that TOGETHER we will cross the finish line!

Emily

The 2013 FARA symposium was a really important one for me. When preparing for the symposium, I wasn’t sure whether or not I should bring my one year old daughter with me. The FA community is very important to me, so I wanted my daughter to get the chance to meet everyone. People were so welcoming to Lily! Her and I both enjoyed the experience so much! I was so excited that the weekend went so well because growing up, I want Lily to think of being a part of the FA community and also having a mother with FA as a positive thing. I felt mixed emotions seeing more younger children there than I had previously, I felt happy that they were there and hopeful that they would find some help during this difficult time but I also felt sad to see children going through this disease and facing some of the frustrating symptoms. Seeing all of them made me want a cure even more and put into perspective why this symposium is held every year. As fun as it is, it is so incredibly helpful to those living with FA and their families.

The annual symposium is always a great time, not only with all of the speakers and information provided (which is so helpful), but also, the friendly atmosphere that the weekend holds, especially with the meet and greet and the bike ride. It’s amazing to see how many brilliant scientists and caring individuals come together. It was so encouraging to hear from a scientific standpoint how close we have come to ending this disease. I personally enjoyed the speakers from different countries; It made me feel so encouraged to know that even people who live in other places are working for a better future for me. Having a child at the symposium gave me a different outlook on things as well; I think in the future it would be a nice idea if there was some kind of activity for the children. It would be so cool if the older kids got the chance to talk with the younger ones about FA and how it affects them personally. This would be helpful especially for the kids who are newly diagnosed. The symposium ended with me feeling hopeful for a treatment in the near future and involved in what is going on with all of the information shared. The 2013 symposium was amazing like it is every year leaving me anticipating next years already.

Jamie

I love the symposium. It is, I think, the first place I went to for FAmily. For better and worse I have a sister with FA (I hate that she has it and we deal with very differently, but it so good to have someone who loves you to talk about FA’s daily frustrations with), so I have known people with FA literally all my life. I think there is something about the energy and optimism that FAmily at the symposium has that feeds my soul. I am not exaggerating. It makes me happy to see so many people not taking it lying down. Fighting FA for themselves, their loved ones and the people they don’t know. Scientists from Italy and France, for instance, helping us...how awesome! Hugs were all over the place, even Ron Bartek was hugging (ha, ha).

I know this is echoing what others have said, but I hate to see children and young people with FA. It breaks my heart. But, I am happy to see that they and their families are involved and feel the love and support of FAmily. Let’s face it, almost all of our FAmily is young to me!! Seriously everyday a ten year-old has to deal with FA is a day too many. Seeing young people with FA fuels my fire. It is at the symposium that I can see the connections... the people I don’t want to have FA who motivate me to raise money and the science that will cure FA that the money I helped raise has funded. I hope when Lily, Jamie’s daughter, is 18 she barely, if at all, remembers Mom in a wheelchair.

I was so happy to be joined at the symposium by my Dad. It was his first symposium. He had a great time and learned a lot. As he was circling me so he wouldn’t fall off his bike to stay with my turtle-like uphill speed, he told me: “It is a rotten reason for a community, but it is an amazing community.” Well said Dad.

Jean

Everyone gathered in the ballroom of the Crowne Plaza Hotel in King of Prussia, Pennsylvania. No program for the evening. Just mingle and enjoy the appetizers.

The room was crowded. I chatted with Jen Farmer, FARA's executive director, about how wonderful the day's Ride Ataxia event had been. It was my first experience at one and I was blown away. From here I checked in with my parents and got myself a Heineken. I talked to the mother of a friend. I found an old friend talking to a new family and made them new friends.

The most interesting exchange I happened to overhear occurred between a researcher from Europe and a local clinician administering a trial of the drug this researcher had developed. There were patients in the room who were on the drug. That's all I heard. Fascinating stuff.

Good times with old friends and new keep me coming back to these events. I like to hear the experts speak at the symposium, even if their presentations are often way over my head. Watching the scientists talk candidly to one another about ideas and the fruits of their labor gives substance to my hopes. It all adds up to a deeply meaningful weekend.

John

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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