Haviva Ner-David

Haviva Ner-David

Haviva Ner-David's fundraiser for FACIOSCAPULOHUMERAL SOCIETY

fundraiser

We are a group of women and girls participaying in the Israel Women's Triathalon this year to raise money for the FSH Society.

Dear Friends and Relatives,

Michal, Meira, Hallel, and I will participate on June 2 in a women's triathalon in Herziliya (http://www.women-tri.com) in memory of Tamar Duboskin, who was killed in 1996 at age 21 in a hit and run bike accident while training for this triathalon. Her mother, Susie, has dedicated herself to encouraging women and girls to participate in triathalons and other sporting events as a vehicle of empowerment.

I was moved by Suzie and Tamar's story and decided to try to complete the triathalon myself despite the physical challenges of having Fascio Scapular Humeral Muscular Dystrophy (FSHD). FSHD is a hereditary disease that can manifest itself in a variety of ways and on a broad spectrum, ranging from patients who never walk in their lives to patients who never even notice they have the disease.

I have suffered from FSHD since childhood, and the disease has progressed steadily since then so that I now have muscle weakness in my face, arms and shoulders, torso, and legs and feet. I walk with the assistance of dictuses on both feet, which is why I am able to even think of participating in this triathalon (walking instead of running).

Hallel also suffers from the disease (as does her brother Nachum), but thank God now has weakness only in her facial muscles (as did I at her age). She is not only a champion wall climber (she won first place in the last national competition for her age category!), but she is the only girl on her soccer team, and has a green belt in karate.

My mother will also participate by helping me in and out of the water (since I will not be able to wear my dictuses in the water) and walking alongside me during the running segment in case I fall. So there will be three generations of women from our family in the event!

I am turning to you for sponsorship. Donations will go to the FSH Society (http://www.fshsociety.org). So please make your pledge at http://www.razoo.com/story/Haviva-Ner-David?referral_code=share so that Hallel will still be climbing at my age!

Thank you, Haviva Ner-David


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Organization Information

FACIOSCAPULOHUMERAL SOCIETY
450 Bedford Street
Lexington, MA 02420

Phone
781-301-6649

Web
http://fshsociety.org

Email
june.kinoshita@fshsociety.org

Mission
Research leading to treatments is producing results. We need everyone's best work now--researchers and donors--to help reach our goal!

EIN 521762747

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$4,283 raised of $7,500 goal
$0 $7,500
18 DONORS

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