Faces of Huntington’s Disease Campaign Highlights

In In The News by Barbara Jacoby

LLH network pressFaces of Huntington’s Disease Campaign Highlights
Personal Struggles of Rare Disease

Campaign Marks May as Huntington’s Disease Awareness Month
and Emphasizes Scientific Hope

New York, NY,  May 1, 2013 – May is Huntington’s Disease Awareness Month, and the Huntington’s Disease Society of America (HDSA) has launched the Faces of Huntington’s Disease campaign to present a different story of courage and perseverance every day of the month to raise awareness of this genetic neurodegenerative disease.  More than 30,000 Americans live with Huntington’s disease, a rare disease that steals controlled movement, cognition and behavior before claiming the lives of its victims.  The Faces of HD are people with HD, caregivers, scientists, clinicians, advocates and other members of the Huntington’s Community who have stepped forward to tell their personal stories and explain how HD has changed their lives and those of their entire families.

Huntington’s disease is a devastating, hereditary, degenerative brain disorder for which there is presently no cure. HD slowly diminishes the affected individual’s ability to walk, think, talk and reason. Symptoms usually appear in an individual between 30 and 50 years of age and progress over a 10 to 25 year period. Cases of juvenile HD, which represent approximately 10 percent of all HD diagnoses, have been seen in children as young as two years of age. Eventually, a person with HD becomes totally dependent upon others for his or her care.

“The Faces of HD are courageous mothers and father, sisters and brothers who are fighting the pain and fear of this devastating and relatively unknown disease,” said Louise Vetter, Chief Executive Officer  of the Huntington’s Disease Society of America.” By sharing their struggles and triumphs, they are helping to build support for vital programs and community services that improve the lives of people affected by HD and their families and remind us all of the importance of caring for members of our community who are not able to care for themselves adequately.”
In addition to explaining the burdens HD places on the patient and his or her caregivers, the Faces campaign emphasizes the importance of HD research not only for HD families, but also for other neurological diseases.  Huntington’s disease is currently the only neurodegenerative with a single cause — a mutated version of the huntingtin gene we all carry. As a result, research into slowing, eliminating and reversing the symptoms caused by the gene will have direct application to understanding and treating other neurodegenerative diseases, including Alzheimer’s, Parkinson’s, ALS (also known as Lou Gehrig’s disease).
Recently. Dr. Francis Collins, Director of the NIH spoke at a national HDSA Symposium and stated that the effort to discover the gene that causes HD paved the way for the Human Genome Project and many of the developments that led to genomic medicine. With projections that more than 1 in every 30 Americans will suffer from a neurodegenerative disease by 2030,  Huntington’s science  is more important than ever – and not just to those at-risk for or diagnosed with HD.
To mark HD Awareness Month, the Huntington’s Disease Society of America has a full slate of events run by its 51 chapters and affiliates throughout the U.S. during May, ranging from Team Hope Walks and gala dinners to educational events and support group meetings. Details on these events and all HDSA programs are available at www.hdsa.org
To learn more about the Faces of Huntington’s Disease, HDSA and the May is HD Awareness Month program, please contact Fred Taubman (ftaubman@hdsa.org  or 212-2421968 ext. 229) at  HDSA.