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

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HDSA In Action Research This past year was an exciting period in the history of HD research, with many drugs, supplements, and genetic approaches moving through the drug discovery pipeline, bringing treatments closer to HD families. The progress we have seen, as well as the confidence drawn from the progress of the comprehensive strategic plan for research point to many potentially positive findings on the horizon. HDSA wants to ensure that our families always have access to the most current research news and developments. Therefore, we have updated the national website, www. HDSA.org, with an extensive research section that presents and explains the latest findings from the HDSA Coalition for the Cure and other leading HD researchers. A research pipeline graph available on the site shows how far promising compounds and genetic approaches have advanced from preclinical work with animal models to clinical trials with HD patients. The chart is updated each time a potential new treatment is identified or developed and each time a new clinical trial begins. During this past year, the first drug to successfully emerge from the pipeline, Tetrabenazine, was finally approved for the treatment of chorea. This is the first drug specifically approved for people with Huntington’s Disease by the FDA. As more potential therapies worked their way towards Clinical Trials, HDSA led a community wide initiative designed to increase awareness of the importance of clinical trials and to help recruit potential participants. HDTrials.org is a special website, where people can anonymously register to learn about clinical studies and trials that take place in their locale. When a new study or trial is announced, members of HDTrials.org will receive an email notification, describing the objective of the trial, the basic qualifications to participate and contact information for those interested in learning more and volunteering to participate. Basic research conducted by HDSA Coalition for the Cure scientists continues to identify new targets for the development of treatments as well as biomarkers which can be used to more precisely measure disease onset and progression, thereby shortening clinical trials and providing guidance as to when treatments should be given to people with the mutated gene. In addition, as key questions are being answered about what goes wrong in Huntington’s Disease, we are seeing new interest from pharmaceutical companies in developing treatments. This has resulted in the development of high throughput assays to screen for compounds that rescue the dysregulation of gene transcription and for compounds that enhance protein degradation and clearance. With several compounds now in final, Phase III trials, there is a strong possibility that Huntington’s Disease will have its first disease modifying treatment within the next few years. In addition, we expect new and more efficient drugs to be entering the research pipeline as a result of the identification of new targets based on critical basic research by HDSA Coalition for the Cure scientists and other leading researchers, and through our partnership with CHDI. 4
Care The HDSA Center of Excellence Program celebrated its 10th Anniversary this year. From the initial Center at Emory University in Atlanta Georgia, the program has expanded to 21 facilities at top medical centers throughout the United States. The Centers offer a unique range of services to the person with Huntington’s Disease and his or her family, including medical care, psychiatric care, social services, physical and occupational therapy, speech and swallowing therapy, nutritional counseling, as well as genetic counseling and testing. In the past year, the HDSA Centers of Excellence saw more than 4,300 patients and their family members. In addition to the testing, counseling and medical management, the Centers provide referrals to community-based services and staff training at long term care facilities and other institutions serving the HD community in their locale. Each Center adapts its programs to fit the needs of their local population. In some cases this includes satellite medical support made necessary by the distance between a patient and a facility, or concern for a patient’s comfort during a longdistance transport. The Centers are also a spoke in the HDSA resource wheel, distributing brochures and information packets, hosting educational events with Chapter and Affiliates and participating in initiatives with other HD organizations. The advancement of our knowledge of HD and how to care for the patient were among the prime reasons that the Center Program was created. The Centers work in tandem with HDSA chapters, affiliates, support groups and regional offices to provide a seamless national network of medical and social services to the HD community, as part of the HDSA Care Continuum. HDSA remains committed to the Centers of Excellence Program, and the extension of their services beyond the Center walls, and current patient coverage. Education and Advocacy One of the most important ways in which HDSA provides support to the HD community, is by providing access to the most current and most beneficial information about Huntington’s Disease. Therefore the Society has become the primary source of medical information; care and support resources; the latest research news; event listings and other key resources for the HD community. Last year the HDSA website was redesigned and to include enhanced sections on research, clinical research, advocacy and available resources, much attention was paid to make it an easily navigable site which our families can access easily, and intuitively find the information they require. HDSA creates print and multi-media resources that cover all aspects of Huntington’s Disease: including caregivers guides, information on juvenile HD, best practices in areas such as 5
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Help for Today, Hope for Tomorrow. Annual Report FY 07-08

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