THANK YOU, THANK YOU, THANK YOU!
May 09, 2017
BENEFITING: National Organization for Rare Disorders, Inc.
Hello Friends and Family!!! This year marks the 2nd year that I will be running for Running For Rare! I am so excited to announce that this year, my partner will be Shauna Sperou! Shauna is a 12-year old girl born with Rothmund-Thomson Syndrome or RTS. There are only about 350 cases of RTS diagnosed around the globe. Shauna is a truly rare child, and not just because of her diagnosis, but because she is such a joy to be around. She loves sports and wants to become a meteorologist some day! I have run and supported several races and Shauna has always been there at the front lines cheering (with some awesome signs too, btw) and handing out water! Please take a look at Shauna's story written by her mom, Laurie: http://running4rare.org/2014/01/19/shauna-rothmund-thomson-syndrome/
Thank you so much for taking the time to visit my page and for donating to such a worthy cause.
National Organization for Rare Disorders, Inc. wrote -
For the tenth consecutive year, patients and advocates will run as members of the Running for Rare Diseases Marathon Team in support of the National Organization for Rare Disorders (NORD). NORD is dedicated to supporting individuals and families impacted by rare disease and the organizations that serve them through programs of education, advocacy, research and financial assistance services.
Rare diseases impact the lives of 30 million Americans – two-thirds of whom are children. On average, it can take a patient 5-7 years to receive an accurate diagnosis, at which time 95% will be told there is no FDA approved treatment or ongoing research to learn more about their disease. The funds raised from the Running for Rare Diseases Team will support NORD’s Undiagnosed Diseases Program; helping individuals to receive a diagnosis from the National Institutes of Health (NIH).
Donations in support of this campaign will be tax-deductible to the extent permitted by law. For eight consecutive years, NORD has received the top (4-Star) rating from Charity Navigator, a leading independent evaluator of charities.
The individuals and families helped by NORD often have nowhere else to turn for assistance. Your support of this campaign is very important to them.