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

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Shoot for the Cure Hoop-A-Thon 2004 Billy Aaron Brown, star of TV and film, is spokesperson for HDSA’s national Shoot for the Cure Hoop-a-thon program. Last spring, Billy Aaron Brown, one of the stars of ABC TV’s hit show 8 Simple Rules for Dating my Teenage Daughter, stepped forward to become the official spokesperson for HDSA’s national Hoop-a-thon program, Shoot for the Cure. HDSA is very pleased to announce that not only is Billy Aaron Brown returning for 2004 but he has pledged to make this year even better. When HDSA announced last June, during the annual convention, that Shoot for the Cure had raised almost $500,000 for HDSA funded research, Billy Aaron Brown was so impressed that he immediately promised that his goal for 2004 would be $1 million. Hoop-a-thons are fun events that bring together adults and kids of all ages to raise money by shooting baskets. Anyone can organize a Hoop-a-thon and anyone can be a shooter. All you need is a place to shoot hoops, friends, neighbors and family members who will shoot or pledge money for your shooters and an event date. HDSA provides the prizes, the how to manual, and the materials you need so you can run a successful Hoop. It’s easy to do and loads of fun. To celebrate Billy Aaron Brown’s second year as HDSA’s national spokesperson, the Grand Prize will be: round trip coach airfare (two nights/three days) for two to Los Angeles and a walk on role on Billy’s hit show 8 Simple Rules for Dating My Teenage Daughter. HDSA’s Walk-a-thon program for 2004 will be featured in the next issue of Toward a Cure. Date Of Hoop HDSA Chapter January 24, 2004 North Carolina February 2004 New Jersey February 7, 2004 St. Louis, MO February 10, 2004 Northern California March 2004 Kentucky March 6, 2004 Northern California March 7, 2004 Upper Midwest Region/ Minnesota March 13, 2004 Iowa March 27, 2004 Upstate NY, South/Southwestern Region, Iowa, Northern California March 28, 2004 Iowa in Nebraska March 29, 2004 Iowa April 2004 Washington DC Metro April 3, 2003 Ohio Valley, Iowa in Missouri, Rocky Mountain In the Adult Individual Category - First Prize: Toshiba 27” Flat Screen TV; Second Prize: Toshiba DVD/VCR Combo; Third Prize: Nikon Coolpix Digital Camera. In the Youth Individual Category - First Prize: Double Shoot Basketball Game; Second Prize: RCA Personal CD/MP3 Player; Third Prize: Canon 35 mm Camera Kit. Hoop-a-thons must take place between January 5 and May 16, 2004 and must be registered with HDSA in order to be eligible for national prizes. Pledge forms and revenue from participants must be received on or before May 31, 2004 from the Hoopa-thon organizers for the National Office to determine the winners. Hoop-a-thons are scheduled in 40 locations throughout the US. Please call HDSA to find out how you can be a part of any event listed or find out how you can organize your own Hoop-a-thon. Date Of Hoop April 4, 2004 April 17, 2004 April 24, 2004 May 2004 May 1, 2004 May 3, 2004 May 8, 2004 May 15, 2004 June 2004 July 2004 HDSA Chapter Iowa New Jersey, Iowa, Western PA New Jersey Indiana, Iowa, Michigan (3), NE Ohio New England Region (3), Greater NY Region Ohio Valley North West Wisconsin Indiana, Central Ohio NE Ohio 8
esearch updates HDSA’S $20 MILLION INVESTMENT IN RESEARCH The Past and the Present When Drs. James Watson and Francis Crick identified the double helix of DNA in 1953, they ushered in a new era in science and research – genomics. All life is composed of similar DNA sequences that have been inherited from our shared ancestors who lived hundreds of millions of years ago. Humans share many genes with fruit flies, worms and mice, as well as with bacteria and yeast, hence the reason that so much early HD research is conducted using yeast and cell models before moving into animal models such as flies, worms and mice. For instance, a human has 46 chromosomes (23 pairs) with 28,000 – 35,000 genes and about 3.1 billion base pairs. A mouse has 40 chromosomes with 22,500 – 30,000 genes and about 2.7 billion base pairs. When researchers create HD mouse models to study HD, their results can provide a fundamental basis of how their research might be applied to a human affected by Huntington’s Disease. In 1983, researchers discovered the marker for HD on chromosome 4. This led to an intensive ten-year search for the actual gene. In 1993, HD researchers announced that they had identified the huntingtin gene and its CAG expansion mutation. In the ensuing decade, HD research, led by the HDSA Coalition for the Cure, has learned much more about the gene and how it may lead to the onset of Huntington’s Disease. Most basic is a new-found understanding of the huntingtin gene itself and how the CAG repeat length may account for a variation in age of onset or how other genes may modify the age of onset. Other basic research funded by HDSA has examined the roles of both normal (wild type) and mutant huntingtin, the processes of aggregation and cell death, as well as metabolic abnormalities and transcription. As well, HDSA funded scientists have developed and used cell and animal models to study aggregation and cell death, toxicity, gene transcription, and much more. These studies also examine, in part, translational research - how the knowledge that has been derived about cell death, toxicity or transcription will translate to human models and clinical trials. Some models have already been used in preclinical work to observe how potential drugs or therapeutic applications might apply to human subjects. To date, mouse models have been used by the HDSA Coalition for the Cure investigators to study Minocycline, Creatine, Co-enzyme Q10, and Cystamine, to name a few. The efficacy (effectiveness) and tolerability in animal models, and mouse models in particular, have yielded significant data as to how they might translate to humans. As data is collected and results remain favorable in pre-clinical studies, HDSA researchers will move into clinical trials that will use small patient bases to test safety, efficacy, benefits of treatments and drugs. In just the past three years, five clinical trials have been developed for Co-enzyme Q10, Ramacemide, Creatine, Minocycline, Cystamine and Phenyl butyrate, with more to follow. HDSA Centers of Excellence have served as sites for some of the clinical trials conducted to date. Since the inception of the HDSA Coalition for the Cure in 1997, our knowledge about Huntington’s Disease has increased dramatically. From the first grants of $183,000 in 1996 to a record commitment of almost $4 million in 2002, HDSA has been the 9
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: MAJOR INVESTORS TO THE HDSA COALITI
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 and 28: progress report Living At-Risk Prei
Page 29 and 30: In Loving Memory of DON KING, PH.D.
Page 31 and 32: WAYSW A Y S TOT O GIVEG I V E YOU C
Page 33: continued from page 20 6. Postpone

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

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