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

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HDSA HOSTS 2nd DANCING LIKE THE STARS The HDSA Northeast Ohio Chapter hosted its second “Dancing Like the Stars” event at Executive Caterers at Landerhaven. Once again, co-chairs Nicole Visconsi Mawby and Karen Rechenbach, along with the committee provided an evening filled with dance competition hosted by American Dance Exchange and featuring The Art Company Orchestra presented by Special Productions. Guests were entertained by a beautiful dance performance by Nicole and her partner PJ Navarro of American Dance Exchange. Everyone then had an opportunity to bid for a spot as a contestant in our dance competition. Paired with dance instructors, contestants danced for a panel of judges for their chance to walk away with the coveted Mirror Ball trophy. The winning couple of Patty Putzbach and Adam Maynard were presented with the Mirror Ball trophy. ABC’s Dancing with the Stars performer, Jonathan Roberts along with dance professionals Sergei Shapoval and Anna Tarnowska entertained guests with their lighter than air moves on the dance floor. Many of our guests had the opportunity to take a spin around the dance floor in the very capable arms of Jonathan and Sergei. Nicole Visconsi Mawby During the evening, guests enjoyed delicious food by Executive Caterers and had an opportunity to win a Tower of Wine or a Shop Til’ You Drop selection of gift cards. The rest of the evening could be spent dancing the night away to the entertaining melodies. The event raised more than $100,000 for HDSA. Thanks to everyone for their attendance and generosity! Photos from this event can be viewed online at www.hdsa.org/neoh. For more information about next year’s event, please contact Karen Rechenbach via e-mail at kkrech@att.net. Having a wonderful evening at the 2012 Dancing Like the Stars! Thank you to our 2012 Dancing Like the Stars Sponsors Mirror Ball Sponsors Nicole Visconsi Mawby Dominic A. Visconsi, Sr. Anthoni & Susan Visconsi The Case Western Reserve University School of Medicine Star Power Sponsors Julie & Dominic A. Visconsi, Jr. Lundbeck, Inc. AMG Marketing Resources, Inc. Umberto Fedeli – The Fedeli Group Third Federal Foundation Steven A. Samuels O’Brien Construction, Inc. Quickstep Sponsors Serpentini Chevrolet Huntington National Bank Family Sponsors Scott Wolstein Wolf Real Estate Management, LLC Anonymous Friends of HDSA Kelly & Visconsi Associates, LLC Moen, Inc. Robert & Noelle Fazio William Sopko & Sons Co., Inc. PJ Navarro, Nicole Visconsi, Mackenzie Platten, and Jonathan Roberts Nicole awards the Mirror Ball to Patty Putzbach and Adam Maynard
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
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