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What is HD?

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  • Meet Dr. Karen Anderson, Director of the Huntington's disease Center at Georgetown...
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    Huntington’s disease is an inherited brain disorder that affects control of movement, thought and behavior. No treatment has been found to halt or slow the progressive loss of mental faculties and physical control from HD.
  • Dr. Karen E. Anderson, Director, Huntington's Disease Center Georgetown
    MedStar Georgetown University Hospital, Washington, DC
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    The Huntington Study Group (HSG) is an international network of clinical researchers who study and care for patients and families with Huntington’s disease. 
     
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    "There is something you can do about Huntington’s disease," explains Dr. Mary Edmondson, president of HD Reach, a North Carolina-based nonprofit that works to help all patients and families gain access to knowledgeable health care and resources to manage the disease.
     
    "We can treat symptoms," she says. "There are things you can do now to make life better." 
     
  • CRVA/Visit Charlotte
  • Charlotte, North Carolina served as host city for the 7th Annual Huntington Study Group Clinical Research Symposium, attracting leading scientists and medical professionals from throughout the world.

    Workshops and the symposium were held November 7-9, 2013 at the Omni Hotel in Charlotte. 
     
    Over 425 patients, families, caregivers, healthcare providers and medical professionals attended.
     
     
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  • Ira Shoulson, MD, Professor of Neurology, Pharmacology and Human Science Director, Program for Regulatory Science & Medicine (PRSM) Georgetown University
    Founder and Chairman, Huntington Study Group
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  • Mary Edmondson, MD, President of HD Reach, a NC nonprofit helping families with Huntington's disease, and member of the Department of Psychiatry,
    Duke University Health Systems
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  • Donald C. Lo, PhD, Director of the Duke Center for Drug Discovery, Associate Professor in the Department of Neurobiology Duke University Medical Center, and Vice President of HD Reach, a North Carolina nonprofit helping families with Huntington's disease
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  • Francis Walker, MD, Medical Leadership Team of HD Reach, a NC nonprofit helping families with HD, Professor of Neurology at Wake Forest University and Director of the Movement Disorder Clinic at Wake Forest Baptist Medical Center
  • In his 26 years as a correspondent for NBC News covering wars, disasters, atrocities and other human suffering, Charles Sabine often put himself in harm's way. These risks paled in comparison to the fear he experienced in 2004, when he was tested for and found to have Huntington's disease. Sabine served as a featured speaker during the 7th Annual Huntington Study Group Clinical Research Symposium and Workshops in Charlotte. 
  • Charles and his brother John Sabine
  • Charles Sabine and daughter Breezy
  • Group shot with Charles Sabine presenting a banner to the UK Prime Minister's residence demanding recognition for people suffering from Huntington's disease
  • Angels of the Abbey check presentation to HD Reach President, Dr. Mary Edmondson to assist  in their mission of "helping patients and families with Huntington's disease"
  • Angels of the Abbey volunteers, providing valuable assistance at the 7th Annual International Huntington Study Group Symposium and Workshops in Charlotte
  • Laleh Emadi (center) with her mother (right) winners of the weekend vacation to Blockade Runner Beach Resort, Wrightsville Beach, N.C. (Dr. Mary Edmondson, left)
  • Blockade Runner Beach Resort, Wrightsville Beach, N.C. Generous donors of the HD community weekend trip prize at the 7th Annual International HSG Symposium and Workshops.
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  • Medical Genetics, University of North Carolina at Chapel Hill
     
    The Medical Genetics Center at UNC - Chapel Hill offers state-of-the-art cytogenetic and molecular genetic testing.
     
    Website: http://medgen.unc.edu
  • This activity was planned and implemented in accordance with the Essential Areas and policies of the Accreditation Council for Continuing Medical Education (ACCME) through the joint sponsorship of Carolinas HealthCare System/Charlotte AHEC and the Huntington Study Group.
     
    The Carolinas HealthCare System/Charlotte AHEC is accredited by the ACCME to provide continuing medical education for physicians.
     
    The Carolinas Healthcare System/Charlotte AHEC designated this live activity for a maximum of 16 AMA PRA Category 1 Credit(s). Physicians should claim only the credit commensurate with the extent of their participation in the activity.
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  • Twitch - Kristen Powers
     
    Twitch is the first documentary to follow the life of an individual going through genetic testing for Huntington’s Disease (HD), a genetic neurological brain disorder that destroys the victim’s ability to walk, talk, think, and reason, eventually leading to death.  The film will chronicle the emotional, political, economic, social and medical journey through this important test, as well as the impact on the individual’s future as well as day-to-day life after receiving the test results.
     
  • Kristen Powers
     
    Kristen Powers has always refused to believe that a person needs a car, money, legality, or a job to make a difference in this world. In 2003, when Kristen was just nine years old, her mother was diagnosed with Huntington's disease, an incurable brain disorder that causes the victim to lose his or her ability to walk, talk, think or reason. It eventually leads to death.
     
    As Kristen began to regain her footing and adjust to the reality of her mother's illness, she received a second blow. After doing some research, Kristen discovered that she and her brothers have a 50% chance of inheriting the same disease that their mother would die of in January 2011.
     
    Kristen decided that this uncertain timeline on her life would not prevent her from achieving her wildest dreams. In her freshman year, Kristen created the Chapel Hill High School Green Tiger Campaign, a sustainability program and garden that has received recognition from Parade Magazine's All-American High School Service Team, Family Circle Magazine, DoSomething.org's Green Your School Competition and the White House.
     
    Now that Kristen has recently turned 18 (the legal age to be genetically tested), she has started her new venture. She is creating a documentary following her genetic testing for Huntington's disease, as well as the challenges youth are faced with while living with this disease. Currently in the fundraising and production phase, Kristen's documentary fundraising campaign raised $10,000 for Twitch in nine days. She hopes that this documentary will spark a national conversation about a disease that has often flown under the radar.
     
    Source: TEDx Teen