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CORNELIA DE LANGE SYNDROME FOUNDATION INC

Maddy's Run Salt Lake City ,  Utah

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Maddy's Run

Maddy's Run is a 5K run/walk benefiting the Cornelia de Lange Syndrome Foundation and honoring the life of Maddy Jackson of Salt Lake City.

Date: Saturday, September 24, 2011
Time: 8:00 a.m.

Location: Liberty Park, 600 E. 1300 Street South, Salt Lake City, Utah

Registration fees:
$25 (Includes an event t-shirt if received before September 17)
$30 on race day (limited supply of t-shirts available for race day registrants)

Runners, walkers, wheelchairs, strollers, and dogs welcome.
Refreshments available after the race.

Questions/Contact:
Anna Braszkiewicz, 801-587-1416
Brandi Simpson, 801-587-1401

Madelyn Jackson passed away in August of 2010 at the young age of 18. Maddy was a pure spirit and a bright light in the lives of so many she touched. She had Cornelia de Lange Syndrome (CdLS), an often-disabling genetic condition that causes medical, physical and cognitive challenges to individuals born with it. There is no cure.

About CdLS
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.


About the CdLS Foundation
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. For more information, call 800-753-2357 or go to www.CdLSusa.org.

 

Date Saturday, September 24, 2011
Location Salt Lake City ,  Utah
Contact Gail Speers
800-753-2357

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