BENEFITING: Friedreichs Ataxia Research Alliance Fara
ORGANIZER: Friedreichs Ataxia Research Alliance Fara
My little sister Emily (age 20) was diagnosed with Friedreich’s ataxia (FA) 8 years ago. Friedreich's Ataxia is a rare, progressive neuro-muscular disease affecting coordination, balance, speech, vision and hearing. It can also include diabetes, scoliosis and life shortening heart complications. Emily’s progression of the disease is very typical. She currently uses a wheel-chair full time, experiences fatigue and heart disease. There is currently no treatment or cure for the disease.
Emily inspires my family and friends everyday to live our lives full and happy. It’s very rare not to find my sister and I together smiling or laughing hysterically with and at each other. Over the past 8 years my family has found strength from doing everything we can to raise funds and awareness to find a treatment and a cure for FA by supporting the Friedreich’s Ataxia Research Alliance (FARA). We have been blessed with a local community of friends dedicated to do the same.
I am always in amazement of how my sister handles her diagnosis with grace, fight and smiling through any challenge. Emily has taught me that limits are like the monsters under our beds; they only exist if you believe in them. She has inspired me to run the NYC Marathon on Nov. 6 for Team FARA to raise funds for research for FA.
Training and completing the marathon will be one of the toughest physical and mental things I have ever done... But every time I feel tired and don’t want to get out of bed to train, every time I think of stopping - I see my sister, smile and gut it out.
For more information please visit curefa.org