Help for Today, Hope for Tomorrow. Annual Report FY 07-08

Education and Advocacy (continued)
nutrition for a person with HD, guides on finding
long-term care facilities, and publications directed
to medical professionals. All publications are
available via download through the national
website, as well as in print.
In addition to these resources, the Society
holds holds an annual National Convention, and
each chapter and affiliate holds local or state
educational events. At these events symposia and
workshops are held, and people affected by HD
may network and learn more about local resources.
The HDSA National Convention, held in
Pittsburgh, PA was a major success, with over 600
attendees participating in the 7 educational
workshop tracks. For the first time, a special NYA
education day was added to the pre-Convention
Thursday schedule which included leadership
training for chapter and affiliate officers, and
professional training for chapter and Center of
Excellence social workers.
HDSA’s advocacy programs reached new
levels of success during the past fiscal year. After
many years of effort with other genetic-disease
focus non-profits, HDSA advocates were able to
celebrate the passage of the Genetic Information
Nondiscrimination Act (GINA), which creates
new protections against the misuse of genetic
information by health insurance companies and
employers.
Following upon the success with GINA,
the HDSA Advocacy program focused on
convincing the Social Security Administration to
update their their disability listings for HD, and
to obtain a waiver for the 2-year Medicare
waiting period for people disabled by HD. After
meeting with official of the Social Security
administration, HDSA embarked upon an effort
to enact legislation to enact these changes. and
in June, 2008, Rep. Bob Filner (D-CA) from San
Diego, California, introduced H.R. 6259, The
Huntington’s Disease Parity Act on the floor
of the House of Representatives. Thanks to
lobbying by HDSA advocates throughout the
U.S. other sponsors signed on, and while the
Bill did not reach the floor for a vote, it was
scheduled for and reintroduced to Congress by a
number of new co-sponsors as the Huntington’s
Disease Act of 2009.
Chapters and Affiliates
Your support of HDSA’s 39 Chapters and Affiliates is critical to their ability to provide local
programming and support all phases of the HDSA Mission
Arizona:
Arkansas:
California:
Colorado:
Connecticut:
Delaware:
Florida:
Georgia:
Illinois:
Indiana:
Iowa:
Kentucky:
Maine:
Massachusetts:
Michigan:
Minnesota:
Arizona Affiliate
Arkansas Affiliate
Northern California Chapter
Greater Los Angeles Chapter
Orange County Affiliate
San Diego Chapter
Rocky Mountain Chapter
Connecticut Affiliate
Delaware Chapter
South Florida Chapter
Central Florida Affiliate
Georgia Chapter
Illinois Chapter
Indiana Chapter
Iowa Chapter
Kentucky Chapter
Maine Affiliate
Massachusetts Chapter
Michigan Chapter
Minnesota Chapter
Missouri: St. Louis Chapter
New Hampshire: New Hampshire Affiliate
New Jersey: New Jersey Chapter
New York: Greater New York Affiliate
Upstate New York Chapter
North Carolina: North Carolina Chapter
North Dakota: Northern Plains Affiliate
Ohio:
Northeast Ohio Chapter
Ohio Valley Chapter
Central Ohio Chapter
Oklahoma: Oklahoma Chapter
Pennsylvania: Delaware Valley Chapter
Western Penn. Chapter
Rhode Island: Rhode Island Affiliate
South Dakota: Sioux Valley Chapter
Texas:
Texas Affiliate
Washington: Northwest Chapter
Washington D.C.: Washington Metro Chapter
Wisconsin: Wisconsin Chapter
6