Washington Metro Chapter
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Our keynote speaker is Robi Blumenstein, President of CHDI Management/CHDI Foundation. CHDI is a privately-funded, not-for-profit biomedical research organization devoted to Huntington’s disease. In 2002, Robi Blumenstein organized CHDI Management, to provide management services to non-profit organizations engaged in Huntington’s disease research. Robi began his career as a lawyer at Torys, a law firm in Toronto, before moving into merchant banking, where he was responsible for structuring and negotiating transactions and supervising investment analysis. He was a principal at First City Capital Corporation, CIBC Capital Partners and MMC Capital. Before all that, when he was still a kid, he built a harpsichord and was a director of Life Times Nine, a short subject film that was nominated for an Academy Award in 1973. Robi graduated from the University of Toronto with a BA (1975) and an LLB (1978), and has an MBA from Harvard Business School (1984).
About the Huntington’s Disease Society of America
The Huntington'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 200,000 at-risk in the United States. Notably, HDSA founded the HDSA Coalition for the Cure, a collaboration of 16 international researchers, as part of the HD Drug Research Pipeline, and supports research which develops potential therapies to treat and eventually cure HD; and HDSA also supports 21 Centers of Excellence at major medical facilities throughout the U.S., where people with HD and their families receive comprehensive medical, psychological and social services, in addition to physical and occupational therapy and genetic testing and counseling. The Society is comprised of 46 local chapters and affiliates across the country with its headquarters in New York City. Additionally, HDSA 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.
What is 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 and only one FDA-approved treatment for a symptom of HD. 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 has been diagnosed in children as young as two years of age. Eventually, a person with HD becomes totally dependent upon others for his or her care. More than 30,000 people in the United States are currently 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.
How do proceeds benefit HDSA?
All proceeds support HDSA's fight to improve the lives of people affected by HD and their families.