Final registration is underway for the 7th Annual Huntington Study Group (HSG) Clinical Research Symposium, expected to attract leading scientists and medical professionals from around the world. Patients, families, caregivers, researchers and medical professionals are encouraged to attend.
Final registration is underway for the 7th Annual Huntington Study Group (HSG) Clinical Research Symposium, expected to attract leading scientists and medical professionals from around the world.
Workshops preceding the symposium include networking for regional doctors and healthcare providers, continuing education for medical professionals, and training programs for service providers, caregivers and local practitioners.
The symposium will feature reports on the latest research on Huntington’s disease (HD), an inherited brain disorder that affects control of movement, thought and behavior.
An interactive community workshop will follow the symposium, including discussions between patients, their families and researchers.
The symposium and workshops will be held November 7-9 at the Omni Hotel in Charlotte.
More than 30,000 Americans have been diagnosed with HD and at least 250,000 others are at risk of having inherited HD from a parent. No treatment has been found to stop or slow disease progression.
“There is something you can do about Huntington’s disease,” explains Dr. Mary Edmondson, President of HD Reach, a North Carolina-based nonprofit that works to help patients and families gain access to knowledgeable healthcare and resources to manage HD.
“We can treat symptoms,” Edmondson says. “There are things you can do now to make life better.”
Dr. Ira Shoulson, Professor of Neurology, Pharmacology and Human Science at Georgetown University and founder and Chairman of HSG, was part of a research team that first identified the HD gene. Clinical research is now advancing at over 105 credentialed sites in the U.S., Canada, Australia, New Zealand, Europe and South America.
“Now we’ve identified the gene that causes HD,” says Dr. Francis Walker, Professor of Neurology and Director of the Movement Disorder Clinic at Wake Forest Baptist Medical Center. “We have a better understanding. Treatment trials are using therapies that are more and more likely to be successful.”
What sets HD apart from other central nervous system disorders and makes HD research critical is that everyone who carries the abnormal HD gene will get the disease.
“HD really is the paradigmatic neurodegenerative disease because a single gene leads to degeneration of certain parts of the central nervous system of the brain,” says Dr. Donald Lo, Associate Professor in the Department of Neurobiology at Duke University Medical Center, VP of nonprofit HD Reach and Director of Duke Center for Drug Discovery.
“Most researchers and the pharmaceutical industry feel if you could cure Huntington’s disease, you would gain tremendous insight into treating many other neurodegenerative disorders,” such as Alzheimer’s, Parkinson’s and amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, Lo says.
Because of the funding available to support research and development, “there’s never been a more encouraging time than right now. Delivering that message to patients, families and physicians is critical,” says Edmondson.
“The international symposium in Charlotte provides an excellent opportunity for us to increase HD awareness and continue moving forward in discovering treatments,” says Edmondson, a Clinical Associate in Psychiatry at Duke University. Patients, families, caregivers, researchers and medical professionals are encouraged to attend.
Charlotte AHEC, and Huntington Study Group an international network of clinical researchers who study and care for patients and families with HD, will jointly sponsor the workshops and symposium.
Mary C. Edmondson, MD
President, HD Reach
Executive Director, Huntington Study Group
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