Join us in Team HOPE Walk for Huntington's Disease, San Francisco

By Gregor Lotz, Postdoctoral Fellow

In a recent “ Science for Life” program at Gladstone, NBC correspondent Charles Sabine described his experience in learning that he had tested positive for the gene that causes Huntington`s disease. Mr. Sabine has spent his career in covering countries torn apart by war and disaster. He set the stage for this presentation by showing NBC news clips from his coverage of war-torn countries and telling stories about the atrocities and terror he has witnessed over the years. He told the personal story of his own near-death experience when a grenade was held to his head. Then the room became perfectly silent when he said,

“THAT, MY FRIENDS, IS A MOMENT OF REAL FEAR. BUT NOT THAT MOMENT, OR ANY OTHER I HAVE EXPERIENCED INSTILLS MORE FEAR, DREAD AND TERROR AS THIS DISEASE.”

Q: What is Huntington´s Disease?

Huntington's disease (HD) is a devastating, hereditary, degenerative brain disorder for which there is no effective treatment or cure. HD slowly diminishes the affected individual's ability to walk, think, talk and reason. Eventually, the patient becomes totally dependent on others for care. HD profoundly affects the lives of entire families—emotionally, socially and economically. One out of every 10,000 Americans has HD. Yet it touches many more with its devastating effects. HD does not skip generations. It typically begins in mid-life, between the ages of 30 and 50, though onset may occur as early as the age of 2. The average life after onset is 10–20 years. The younger the age of onset, the more rapid the progression of the disease. Children who develop the juvenile form of the disease rarely live to adulthood.

Q: Why we walk?

Here at Gladstone, many of us work to understand and cure HD. While HD isn't as prominent or prevalent as some of the other afflictions that the Gladstone team works on, it is a universally fatal disease that causes significant psychiatric, movement, and cognitive symptoms before death. To help support patients and their families who suffer from this inherited disease, we have decided to participate in this year's Huntington's Disease Society of America (HDSA) annual walk.

Q: Why should I support Huntington's Disease Society of America (HDSA)?

HDSA is an all-voluntary organization dedicated to supporting patients with the disease, educating the public about the disease, and promoting research.

HDSA was founded in 1967 by Marjorie Guthrie when her husband, Woody Guthrie, the legendary American folksinger, lost his long and painful battle with HD. HDSA is committed to funding research that will lead to improved treatments and, ultimately, a cure. It supports 17 major HD laboratories in North America and Europe through the HDSA Coalition for the Cure and provides 23 grants and fellowships to young investigators just starting out in the field of HD research.

HDSA also leads in providing care for HD patients and their families at our 21 Centers of Excellence. HDSA's 12 regions and 37 chapters and affiliates and 150+ support groups help educate the general public and healthcare professionals. This dedicated circle of people provides networking and information and creates fundraising opportunities through a wide range of exciting and worthwhile events nationwide