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FARAFARA Cure FA

FA Moms!

On August 15, 2010, Louise and Sandy (parents with children who have FA) will participate in the Seattle Triathlon as part of Team FARA. 

What does Team FARA mean to us: 

Team FARA encourages us to push, step outside the comfort zone, reach and accomplish something for ourselves, and more importantly for the greater Friedreich’s Ataxia community.

Sandy's Story: 

My daughter was diagnosed at the age of 4 1/2 with FA.  FA is a life-shortening, debilitating, and rare neurogenetic disease.  Chelsea opens her eyes every morning confronted with new challenges and frustrations.

Chelsea is now blind and cannot do most activities that many of us take for granted, such as self-feeding, bathing, brushing her teeth, or dressing herself.  This disease has robbed Chelsea on her independence, her dignity and her pride.  Remarkably, despite the grim scenario painted above, Chelsea is cheerful, happy and loving.  This disease progresses with time and there is presently no treatment or cure. 

Anyone who has ever met Chelsea knows that she is lit from within.  She has a heavenly glow about her.  Chelsea is a dreamer and one day dreams of a cure.  We must keep the hopes and dreams of Chelsea, and all of those affected with FA alive by supporting research.  There is no longer any doubt – “Working alone, there is little any of us can accomplish.  Acting together, there is very little we will NOT accomplish.”  Ron Bartek, President and Founder, FARA. 

Please help is reach our goals and help Chelsea achieve her dream 

Louise's Story:

 In 1991, after 2 years of diagnostic testing, we were struck with the devastating news that our beautiful son Joshua, age 6, had FA.  Eighteen months later, our lovely daughter Leah was given the same diagnosis.  Last year at the young age of 23, our son passed away from cardiac failure.  Our daughter Leah, now 23, continues her brave battle as this debilitating disease continues to progress. She inspires me every day with her smile.  Our only hope is to find a cure for FA and our only way is thru research.  This year I am dedicating my training and completion of the Danskin Triathlon to Joshua’s memory.  You can support our cause by praying for a cure and by contributing financially (every penny helps) to FARA (Friedreichs Ataxia Research Alliance) via this website.  Together Everyone Achieves More.

To donate to these Moms of the FAmily please visit their fundraising site.

About the Author

Kyle Bryant

Kyle Bryant

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