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FARAFARA Cure FA

FARA Represented in IRONMAN Lake Placid

FARA was represented in Lake Placid's annual IRONMAN competition on July 26, 2015! Hannah Feinberg, a friend of the FA community, was inspired by the Avery sisters. Hannah has been friends with Laurel and Alison Avery for more than 15 years, and when they were diagnosed with FA, she knew she had to do something to help. 
 
Before Laurel was diagnosed with FA shortly after age 8, Hannah had never heard of FA. (Alison began experiencing FA symptoms around age 15.) "This relentless disorder has already robbed them of their energy, the ability to walk unaided, and some of their independence. The symptoms affected our ways of having fun, but in no way did it alter their amazing, loving, and kindhearted personalities," says Hannah. 
 
In 2013, Hannah competed in her first IRONMAN Lake Placid and placed 4th in her age group.  "I had done minimal training and knew that my body was capable of more. I decided I would race the 2015 IRONMAN Lake Placid raising funds and awareness for FARA because I wanted something to justify going out and pedaling my bicycle for 6+ hours or running  10+ miles. Triathlon is a very selfish sport and I wanted to be a part of something bigger than myself," says Hannah. 
 
Wearing colorful Team FARA race clothes, Hannah caught the eye of a lot of her fellow competitors and spectators. She was able to tell people who had never heard of FA about her friends and share FARA's mission to raise awareness and funds. In fact, Hannah raised $7,030 for FARA this year! Way to go Hannah! 
 
Hannah trained hard for the IRONMAN competition. Athletes begin with a two-loop swim in clear Mirror Lake, with the famous sight line at the bottom of the lake to guide them. Transitioning in the Olympic Speed Skating Oval to the bike, the rolling mountain views provide a scenic backdrop to the ride. Two loops of 56 miles bring competitors back to the Oval once again, where they begin their 26.2-mile run through the town and around the lake. Whew!  
 
"I have many motivators when training gets tough. A couple days this year when I really didn't want to go train I would think how lucky I am that I have a body that allows me to torture it the way I do. I would think of people with FA or any inhibiting disease and remind myself that they probably wish they weren't in a wheel chair and could enjoy the things I take for granted, such as swimming, biking and running," says Hannah. 
 
Laurel and Alison were there to cheer Hannah on during every stage of the event! They meandered through the crowds at 6am to give Hannah a good luck hug at the start, waited 3 hours then watched her pedal by on her bike. Three hours later, she pedaled by on her bike again, greeted by cheers from Laurel and Alison! Then they watched and cheered so loudly during the run and made Hannah smile every time she ran by them. This gave her an extra boost of much needed energy, especially when her muscles were exhausted from the competition. The Avery girls were standing at the finish line, waiting for high-fives as Hannah crossed the finish line and then gave big congratulatory hugs! 
 
"Crossing the finish line felt amazing. There were many times in the day that I really didn't think I would make it. I knew that not finishing wasn't an option because of all the people out on the course supporting me, the FARA community, and all of those who donated supporting my cause," says Hannah. 
 
The FA community is so thankful for Hannah's support in raising awareness and funds! Let's all congratulate her on a job well done!
 

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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