The Marker - 2004 - Huntington's Disease Society of America

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progress report Living At-Risk HDSA to Honor Representative Louise Slaughter for Advocacy Efforts On Thursday, March 4, HDSA will pay tribute to Representative Louise Slaughter (D-NY) for her tireless efforts to protect millions of Americans from genetic discrimination. Rep. Slaughter has been instrumental towards introducing legislation that will protect Americans from genetic discrimination in the work place and by health insurance carriers. Since Representative Slaughter began her efforts, the Huntington’s Disease Society of America has been a steadfast supporter of Rep. Slaughter and the Genetic Nondiscrimination Act. To thank her for reaching out to those who are threatened by hereditary diseases, and for working towards instituting legislation that will protect all of us from threats to our livelihood and care plans, HDSA applauds and thanks Rep. Louise Slaughter with a ‘Giving A Voice to HD’ Award. HDSA also recognizes leading Senators who, in November 2003, were active in moving a Senate version of the legislation to the floor for a successful vote (S.1053). HDSA thanks Senators Edward Kennedy (D-MA), Tom Daschle (D-SD), Tom Harkin (D-IA), Christopher Dodd (D-CT) and Alan Specter (D-PA). It has been a fight however, to bring this legislation to the floor of the House for a vote. House leaders have been trying to keep discussion of the bill in Committee thus making it doubtful that legislation will pass this year. As of early February as this magazine when to print, Rep. Slaughter was stepping up pressure on republican representatives through voluntary health organizations like HDSA while soliciting key holdouts to support bringing the bill forward for a vote. HDSA also recognizes Rep. Bob Ney (D-OH) for his efforts to garner House support. The guarantee of protection from genetic discrimination in the workplace and in health insurance cannot be understated. Many individuals at-risk for HD have elected not to be tested because they fear that a positive result will adversely impact their opportunities for employment and for low cost health insurance. With the advent of legal protections, it is hoped that many in the HD community will avail themselves of the advances made in genetic testing. If you would like to thank Rep. Louise Slaughter for her efforts to protect millions of Americans from genetic discrimination, you may send your letter to: Hon. Louise Slaughter, 2469 Rayburn House Office Bld., Washington, DC 20515. Become an HDSA Advocate! Your voice CAN make a difference in Congress! You can join HDSA’s growing list of advocates and give your voice to important issues that affect HD families and others with neurodegenerative diseases across the nation. In 2003, HDSA took an active role in genetic nondiscrimination legislation, federal funding for NIH/NINDS, and redefining HD for the Social Security Administration. This year promises to be even more active – and now is the time to be added to the HDSA list serve. And please indicate whether you wish to continue receiving HDSA publications like The Marker and Toward a Cure. Complete the form at right and return it in the envelope provided. ❑ I want to continue receiving The Marker and Toward a Cure ❑ Remove my name from the HDSA mailing list Your Name Mailing Address City State Zip Phone Email Please be sure to include your e-mail so we can alert you to important bills in Congress. 27
In Loving Memory of DON KING, PH.D. On February 16, 2004, HDSA bid farewell to an extraordinary man who had dedicated himself to the care and cure of HD. His departure will leave a void that will resonant throughout the HD community. Those of you who attended HDSA annual conventions from 1999 to 2003 were privileged to meet HDSA’s Chairman of the Board, Dr. Don King. Those who were fortunate to work with him during his years as a “volunteer” for HDSA will remember his kindness, his vision, and his absolute belief in a future free of Huntington’s Disease. Don King was first named HDSA’s Chairman of the Board in 1999. During his tenure he presided over the greatest expansion in HDSA’s history. No part of the mission statement was left unanswered or unimproved. The reorganization of the Society under Don King created a leaner and more talented organization that was better prepared to adapt to the rapid advancements in the care and cure of HD. Our research program and support for families is unparalleled by any other HD organization in the world and much of this accomplishment must rest in the vision that Don King had for the Society. In just four short years under Don’s leadership, HDSA’s commitment to research grew from $2.1 million to more than $3.5 million and 40 HD researchers worldwide. In 1999, HDSA had six HDSA Centers of Excellence for Family Services. Today there are seventeen major medical facilities across the country that carry that designation and, by the end of 2004, that number will increase to 20. Don King had a vision – one that promised a brighter future for those who lived “at risk,” for those affected by this devastating disease and for those who cared so lovingly for them. His leadership, strength of character and insight fostered a spirit of collaboration that brought together the diverse segments of the HD community. Today, thanks to the efforts of this one extraordinary man, we are a “family” working together towards one goal – a future free of HD. It is with regret that we bid farewell and say a final thanks to Don King, Ph.D. His memory will burn brightly in the hearts and minds of our HD families everywhere and with the staff with whom he worked so closely. Goodbye Don and thank you for all that you have done. HDSA has established the Don King Memorial Fund for Care and Cure. If you would like to make a donation today, please contact the HDSA National Office at extension 17. All gifts will be matched 2:1 by the HDSA Research Matching Gifts Challenge Fund. Please consider making you donation today in memory of someone who gave so much to the care and cure of HD. Doctors Who Make House Calls Good news for those who cannot visit their primary care physician! The American Academy of Home Care Physicians (AAHCP), as a public service, has included on its web site, a list of member physicians who make house calls. Patients and family members who are searching for a physician to come to their home can now go to www.aahcp.org and click on ‘Locate a Provider’ to access the physician database. Physicians are arranged first by state and then alphabetically (first name) within that state with zip codes served by that physician listed beneath their contact information. Not all physicians will be listed. Be sure to ask your physician or healthcare provider if they are aware of this service and whether they would like to become a member. Abridged and edited from Take Care!, Volume 10, Number 4, Winter 2003, with permission from the National Family Caregiver’s Association. For more information visit www.nfcacares.org. 28
Page 1 and 2: marker THE Huntington’s Disease S
Page 3 and 4: a message from B ARBARA B OYLE HDSA
Page 5 and 6: The new organization calls for curr
Page 7 and 8: Renewing Grants 2003-2004 Yury O. C
Page 9 and 10: MAJOR INVESTORS TO THE HDSA COALITI
Page 11 and 12: esearch updates HDSA’S $20 MILLIO
Page 13 and 14: II. CELL AND ANIMAL MODELS A. Mouse
Page 15 and 16: OCTOBER 10, 2003 The Grand Ballroom
Page 17 and 18: HDSA CENTERS OF EXCELLENCE LEAD WAY
Page 19 and 20: HDSA Center of Excellence at the Un
Page 21 and 22: Pre2CARE: Pilot Safety and Tolerabi
Page 23 and 24: Social Security Disability Update B
Page 25 and 26: Talking Technology Losing the abili
Page 27: progress report Living At-Risk Prei
Page 31 and 32: WAYSW A Y S TOT O GIVEG I V E YOU C
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The Marker - 2004 - Huntington's Disease Society of America

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