Largest gathering in world of Huntington’s Disease families begins in Las Vegas June 8 at 27th annual convention

Families, clinicians, scientists to learn about research developments, clinical trials; convention hosted by new Huntington’s Disease Society of America Las Vegas Affiliate

LAS VEGAS – On Friday, June 8, more than 1,000 people will gather for the opening ceremony of the 27th Annual Huntington’s Disease Society of America Convention.

The convention features symposia on new developments presented by some of the world’s leading neuroscientists and workshops on topics ranging from care giving, to genetic testing, to advocating for Social Security and Medicaid and how to plan a fundraising event. It will also include social events and a Team Hope walk-a-thon on Saturday morning.

Huntington’s disease (HD) is a devastating, hereditary, degenerative brain disorder that results in a loss of cognitive, behavioral and physical control, and for which, presently, there is 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 have been diagnosed in children as young as 2.

More than 8,000 Nevadans are impacted by Huntington’s Disease by either carrying the gene or being at risk for having the gene. HD is also one of the three main disorders focused on at the Cleveland Clinic Lou Ruvo Center for Brain Health.

Convention attendees will travel from all parts of the United States, Canada and Europe. On Thursday, June 7, pre-convention all-day workshops for professional training (social workers, genetic counselors and other health professionals), HDSA chapter leaders and members of the National Youth Alliance will take place with more than 300 participants. A special workgroup on Juvenile Huntington’s disease will also be held on Thursday sponsored by the National Institute of Health (NIH)/National Institute of Neurological Disorders and Stroke (NINDS).

For the first time, the Opening Ceremony, Research and Clinical Trials Symposia, and six workshops will be videostreamed live so that Huntington’s families who cannot attend the event will be able to participate from their homes.

“The HDSA Annual Convention is an important event for our families,” said Louise Vetter, HDSA CEO. “In addition to the educational workshops and discussions, it’s an opportunity to see friends, share common experiences, socialize and recognize the incredible work of the many volunteers who make the society thrive.”

For the new Las Vegas Affiliate, it’s the culmination of an incredible first year of operation, which included a successful Team Hope Walk-a-thon that raised nearly $30,000 for HDSA programs to improve the lives of everyone affected by Huntington’s disease.

“Having the convention in Las Vegas will raise awareness about a disease that is often not talked about or discussed even among families who are effected,” said Megan Lane, a member of the HDSA Las Vegas Affiliate. “There is often a stigma associated with this disease and we are working to change that by creating a community of support in our city.”

For more information about the 27th Annual HDSA Convention, HDSA and Huntington’s disease, please visit www.hdsa.org.

About Huntington’s disease
Huntington’s disease (HD) is a devastating, hereditary, degenerative brain disorder that results in a loss of cognitive, behavioral and physical control, and for which, presently, there is 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 have been diagnosed in children as young as 2.

Eventually, a person with HD becomes totally dependent upon others for his or her care. More than 30,000 people in the United States have been diagnosed with HD. Each of their siblings and children has a 50 percent risk of developing the disease; therefore, 250,000 are at risk.

Although medications can relieve some symptoms in certain individuals, research has yet to find a means of conquering or even slowing the deadly progression of HD.

About the Huntington’s Disease Society of America
TheHuntington’s Disease Society of America is the largest 501(c)(3) non-profit volunteer organization dedicated to improving the lives of everyone affected by Huntington’s disease.

Founded in 1968 by Marjorie Guthrie, wife of folk legend Woody Guthrie who lost his battle with HD, the Society works tirelessly to provide the family services, education, advocacy and research to provide help for today, hope for tomorrow to the more than 30,000 people diagnosed with HD and the 250,000 at-risk in the United States. The society is comprised of 46 local chapters and affiliates across the country with its headquarters in New York City. Additionally, HDSA supports 21 Centers of Excellence at major medical facilities throughout the United States and hosts more than 160 support groups for people with HD, their families, caregivers and people at-risk, and is the premiere resource on Huntington’s disease for medical professionals and the general public.

To learn more about Huntington’s disease and to get involved in HDSA, please visit www.hdsa.org or call 1-800-345-HDSA.

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