About Maddy’s Run for CdLS and Ability Found:
Maddy’s Run is a 5K run/walk honoring the life of Madelyn Jackson and benefiting the Cornelia de Lange Syndrome Foundation and Ability Found. This year’s Maddy’s Run will be held at 8:00 am on Saturday, September 28, at Liberty Park, Salt Lake City. Participants can register and also donate to the cause using Bitcoin here.
Madelyn “Maddy” Jackson passed away in August of 2010 at the age of 18. Maddy was a pure spirit and a bright light in the lives of so many she touched.From a very young age, despite her seeming fragility, Maddy had a fighting spirit and zest for experiences. Whether it was amusement park rides, a bumpy ski slope, swimming in Hawaii or loud funky music, Maddy loved life and showed it. She would smile so hard you could see it from the back, and would laugh and click when she was happy, which was often.She was especially happy sitting with her mom around the breakfast table on weekend mornings, or dancing with her dad late into the night. And she loved a party. Especially birthday parties—so much so that every family birthday party somehow turned into hers. And that was just fine.
About Cornelia de Lange Syndrome (CdLS) and the CdLS Foundation:
CdLS is a genetic syndrome that occurs in about 1 in 10,000 births. Common medical problems include gastroesophageal reflux, bowel obstruction, hearing loss, and congenital heart defects. Although individuals with CdLS range from mildly to severely affected, most have similar physical characteristics: small size, hands and feet; thin eyebrows that meet in the middle; long eyelashes; upturned nose; and thin, downturned lips. Some individuals have limb differences, including missing fingers or arms, and partial joining of the toes. Founded in 1981, the CdLS Foundation is a family support organization that exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS make informed decisions throughout their lifetime.
About Ability Found:
Ability Found’s mission is to provide medical and rehabilitation equipment free of charge to people with disabilities who cannot afford it. Founded in 1993, Ability Found, a small nonprofit based in Murray, UT, has donated millions of dollars of medical equipment and professional services to Utahans in need.
To donate Bitcoin please go to: http://maddysrun.com/register/
To learn more please go to: http://maddysrun.com