Download our Fall/Winter 2012 Newsletter! - Huntington's Disease ...

Huntington’s Disease
Society of America
4TH ANNUAL
TEAM HOPE WALK
The Northeast Ohio Chapter’s “4th Annual Team Hope
Walk” took place on July 21 at Dodge Intermediate School
in Twinsburg. More than 200 walkers joined together to
help raise over $20,000 in of support Huntington’s disease.
Honorary walk leaders
included Mickey and Lauren
LaRosa along with more than
40 friends and family members who were a part of Team Jean Year 3. Team Jean
walked in memory of Jean LaRosa (Mickey’s wife and Lauren’s mother) who succumbed to HD
on this same date 10 years earlier.
Congratulations to Team Jean for, once again, winning the Top Team Fundraising Award. The Top
Individual Fund Raiser was Scott Anderson and the Top Corporate Team was Crossroads Hospice.
Ed and Jeanie Chresos Skuza donated the E&J Reptile Show so participants could enjoy an
up close encounter with various reptiles and have their pictures taken. Thanks to Subway,
Romeo’s Pizza, Heinen’s, and CVS (all of Twinsburg) as well as Discount Drug Mart of
Reminderville for the generous donations of food and beverages.
The following sponsors are also recognized for their generous support: National Sponsor Lundbeck,
Regional Sponsors Crossroads Hospice Foundation and Cross, Wietfeldt, Brockway & Splendorio. Other
major sponsors included Apple Growth Partners, Specialty Lubricants Corporation, DB Homes, Industrial
Mold & Machine and A Sign Above.
Dave Kuhary served as Volunteer Chair of this event. The Chapter is grateful to the Walk Committee and the
many volunteers who helped with registrations, donations, raffles, set up, tear down and fund raising. Some
of these volunteers included college students from the University of Akron, Ohio State University and Bowling Green State University, led by youth coordinator
Amanda Cox with the University of Akron. For information on the 2013 Walk, please check the Chapter’s website at www.hdsa.org/neoh for updates.
ADVOCACY CORNER
Huntington’s Disease Parity Act Update
We are up to 142 cosponsors of H.R. 718 in the House including six Members from Ohio, and 11 cosponsors of S. 648 in the Senate! We need your
help to secure additional cosponsors. Go to www.hdsa.org/advocacy to learn more, and then add YOUR voice by using HDSA E-Advocacy Center,
at www.hdsa.org/takeaction.
The Huntington’s Disease Parity Act of 2011 is important for all people affected by Huntington’s disease. If enacted into law, this bill would make it easier
for people with Huntington’s disease to receive Social Security Disability and Medicare benefits.
Special Focus: Senate
Neither Senator Sherrod Brown nor Senator Rob Portman are yet
cosponsoring S. 648. Please contact their offices in Washington, D.C.
and ask them to cosponsor S. 648, and help individuals affected by HD
gain access to Disability and Medicare coverage.
Ohio Senators healthcare staffer information:
Name Staff Email Staff Phone
Sherrod Brown allison_rochford@brown.senate.gov (202) 224-2315
Rob Portman brian_riedl@portman.senate.gov (202) 224-3353
To fix these problems, we need to redouble our efforts in support of the
Huntington’s Disease Parity Act of 2011 (S 648/HR 718), which will ensure
that individuals with HD have the resources and care they need by:
• Compelling SSA to update the guidelines used to determine disability
for an individual with HD, and
• Waiving the 2-year waiting period for Medicare once an individual
qualifies for Social Security Disability.
If your loved one has been denied Social Security Disability (SSDI or SSI),
HDSA may be able to help. Please contact Jane Kogan at the National
Office in New York City at jkogan@hdsa.org if your loved one fits the SSA
eligibility criteria for Social Security Disability, but the application was
denied by Disability Determination Services.
HDSA on FACEBOOK!
Huntington’s Disease Society of America (HDSA) Great Lakes Region