Philly Cure HD (Huntington’s disease) announces second annual Walk for a Cure with special guest Nancy Wexler from the Hereditary Disease Foundation
Philly Cure HD, an organization dedicating to improving the lives of local families with Huntington's Disease, will take the next step in the fight against HD by hosting our 2nd annual fundraiser and awareness walk at the Norristown Farm Park on Sunday May 6, 2012 at 1pm.
In addition to the live music, food and fun of last year, we will host a very special guest, Nancy Wexler, PHD and well respected Huntington's disease researcher. Nancy is President of the Hereditary Disease Foundation, founded by her father. Nancy played an important role in the discovery of the complex chromosome test which will tell patients if they will develop Huntington's disease. In addition to her role at the HDF, Nancy also is a member of Columbia University's Neurology and Psychiatry department.
Huntington's disease is a hereditary degenerative neurological disease that usually strikes people in their 30s and 40s; however, children are not immune. 1 in 20,000 people will get Huntington's disease; 15 million in the United States. At present there is no cure.
Philly Cure HD was started in February of 2011 by a small group of people in the greater Philadelphia area. Our mission is to improve the lives of local patients and families of HD by providing counseling, future planning and referral for assistance, by fostering an HD community, by educating families and the greater community and by supporting HD research. In our first year, we have been able to make a generous donation of 30,000 dollars to the Hereditary Disease Foundation. Philly Cure HD has also employed the services of a full time HD Care Consultant to assist those individuals and families living with HD.
About Huntington’s disease was named for Dr. George Huntington, who first described this hereditary disorder in 1872, HD is now recognized as one of the more common genetic disorders. More than a quarter of a million Americans have HD or are "at risk" of inheriting the disease from an affected parent. HD affects as many people as hemophilia, cystic fibrosis or muscular dystrophy.
HD typically begins in mid-life, between the ages of 30 and 50, though onset may occur as early as the age of two. Children who develop the juvenile form of the disease rarely live to adulthood.
HD affects males and females equally and crosses all ethnic and racial boundaries. Each child of a person with HD has a 50/50 chance of inheriting the fatal gene. Everyone who carries the gene will develop the disease. In 1993, the HD gene was isolated and a direct genetic test developed which can accurately determine whether a person carries the HD gene.
The Hereditary Disease Foundation aims to cure genetic illnesses by supporting basic biomedical research. The foundation was started by Dr. Milton Wexler in 1968 when his wife was diagnosed with Huntington’s disease. Using a variety of strategies – workshops, grants, fellowships and targeted research contracts – the foundation seeks to solve the mysteries of genetic diseases and develop new treatments and cures.