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FARAFARA Cure FA

Team FARA Ottawa and Lake Placid Marathon Challenge

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On Friday, May 27, I embarked on a running journey that would span over 1,000 miles in a 17 day period. I had run for Team FARA before, but this time I wanted to do something a little extra special. After a lot of thinking, I came up with the idea of the Ottawa Marathon and Lake Placid Marathon Challenge. These two races would be separated by a mere fifteen days and would certainly test my running mettle. The motivation and inspiration for this endeavor was an amazing girl named Cecelia Egan. Cece, as her friends call her, is one of my daughter's closest friends in her 7th grade class and one of the kindest and bravest individuals I have ever met. I was truly honored to run in Cecelia's name and I was so incredibly grateful to have the opportunity to run for her.

The first leg of this two marathon challenge took place north of the border in the beautiful city of Ottawa, Ontario. As I drove the 518 miles from my house, I could hardly contain my excitement. I would be combining two of my greatest passions: my love of running and my tremendous desire to find a treatment and a cure for FA. Some of my closest friends and the best people in the world are afflicted with this terrible disease. The very thought of making progress towards a treatment and a cure gives me chills! I know we will get there one day. Step by step, we are getting closer and closer. Thanks to the kindness and generosity of so many people, we were able to raise over $1,400 for FARA for this one race alone! I was blown away for the incredible support I received and was very anxious to show my gratitude by getting out there and running!

TeamFARA MFsummer2As I crossed over the bridge into Canada, I turned on my radio to hear some of the media coverage for this race. This happens to be the largest racing event in all of Canada, drawing over 49,000 participants for this race weekend. However, one bit of trouble loomed. Ottawa was in the midst of a historic heatwave, with temperatures soaring above 90 degrees. Much to my dismay, the idea of a complete cancellation of the race weekend circulated. In the end, despite the historically hot conditions, the race went on. Thanks to the hundreds and hundreds of volunteers who gave out water, ice cubes, bananas and wet sponges on the course, I managed to somehow cross the finish line. What kept my legs moving throughout this difficult race? The face that I was racing for Team FARA gave me a sense of pride and strength that is hard to articulate. Quite simply sense of pride I feel when I put on that Team FARA running shirt is indescribable.

After 12 days off, I got back in my car and headed north to beautiful upstate New York and the beautiful village of Lake Placid. The excitement that fills this small town during race weekend is extremely contagious. The smiles and simple head nods between the runners walking the streets of this cozy little town was a sight to see. The camaraderie between the participants give this race the feel of an Olympic like event. As far as the weather? Well, lets just say it was the polar opposite of the Ottawa Marathon. Instead of temperatures in the 90's, the thermometer struggled to hit 50. The blazing sun was replaced by dark rain clouds. When the horn sounded to begin the race, the temperature was a brisk 52 degrees. As I ran up and down the diabolical Adirondack Mountain Hills, I pleaded with the weather Gods to keep the rain and wind away. Clearly, those wishes were not heard as the skies opened up and rain poured down upon us for the final 14 miles. As I crossed the finish line, the temperature had plummeted to a bone chilling 41 degrees! With the wind chill hovering just above freezing at 34 degrees, I could not wait to get back to my hotel and warm up. Do you know what really warmed me up? It was the fact that these two races raised over $2,500 for FARA! Now that is simply amazing! The generosity shown by so many is just astounding and so incredibly heartwarming.

I am asked frequently why I run for team FARA. The answer is rather simple: my desire to find a treatment and a cure is stronger than words. I know each day we are getting closer, but we are not there yet. We may be getting closer, but there is a long way to go. My legs are the one small way that I can make a difference. If I had a million dollars, I would give every last penny to help find a cure. Since I don't have those resources, I will use my God given ability to run as my vehicle to make a difference. When I look at what FA does, it makes my frustrated beyond words. My friend Cecelia, and others who are afflicted with this terrible disease, deserve to live in a world that is free of FA. I consider myself to be the eternal optimist, and my belief that we WILL find a cure is what keeps my legs moving. I want to be part of something extraordinarily special. I want to be right there when the doctors announce a break through treatment. I want to be part of something special. I will never, ever stop running until we find a cure. With your help, we WILL put an end to FA forever!

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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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