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Huntington's Disease Advocacy Center - HDAC Article: - Letter to Congress
HDAC Article: - Letter to Congress
Letter to Congress
-- Margaret Pond     print-friendly ]

I sent an email to Rep. Wilson, thanking him for his efforts to create support for a cure and awareness for HD. He replied with this 13 July email. I wanted to share it with you.


Thank you for writing to me concerning Huntington's Disease. I know just how difficult it is for families who must deal with a loved one's fight against this disease. In early July, I spoke at an event, which dedicated a garden at the S.C. Department of Health to a patient who passed away from Huntington's Disease.

I was also honored to make two speeches on the House Floor concerning Huntington's Disease. I have enclosed copies for your review:

HUNTINGTON'S DISEASE -- (House of Representatives - June 13, 2002)

The SPEAKER pro tempore. Under a previous order of the House, the gentleman from South Carolina (Mr. Wilson) is recognized for 5 minutes.
      Mr. WILSON of South Carolina. Mr. Speaker, I rise today to draw attention to Huntington's Disease which affects approximately 30,000 people in the United States. Each child of a parent with Huntington's Disease has a 50 percent risk of inheriting the illness, meaning that there are 200,000 individuals who are at risk today. Huntington's Disease results from a genetically programmed degeneration of nerve cells in certain parts of the brain.
      While medication is available to help control the symptoms of Huntington's Disease, sadly, there is no treatment to stop or reverse the course of the disease. According to the Huntington's Disease Society of America, this disease is named for Dr. George Huntington who first described this hereditary disorder in 1872. Huntington's Disease is now recognized as one of the more common genetic disorders in America. Huntington's Disease affects as many people as hemophilia, cystic fibrosis and muscular dystrophy.
      Early symptoms of Huntington's Disease may affect cognitive ability or mobility and include depression, mood swings, forgetfulness, clumsiness, involuntary twitching, and lack of coordination. As the disease progresses, concentration and short-term memory diminish and involuntary movements of the head, trunk and limbs increase. Walking, speaking, and swallowing abilities deteriorate. Eventually the person is unable to care for himself or herself. Death follows from complications such as choking, infection, or heart failure.
      Huntington's Disease typically begins in mid-life between the ages of 30 and 45, though onset may occur as early as the age of 2. Children who develop the juvenile form of the disease rarely live to adulthood. Huntington's Disease affects men and women equally and crosses all ethnic and racial boundaries. Everyone who carries the gene will develop the disease. In 1993, the Huntington's Disease gene was isolated and a direct genetic test developed which can accurately determine whether a person carries the Huntington's Disease gene.
      I would like to commend Dr. Ruth Abramson of Columbia, South Carolina for her leadership and dedication for conducting ongoing research to find a cure for Huntington's Disease at both the University of South Carolina School of Medicine and the South Carolina Department of Mental Health. I also want to commend my chief of staff, Eric Dell, and his courageous mother, Ouida Dell, for their efforts in fighting Huntington's Disease within their family.
      I encourage the American people to be aware of their own family histories, to be aware of the issues in genetic testing, and to advocate for families with Huntington's Disease in their communities. I also call on my colleagues in the House to join in this effort to find a cure for those suffering from this disease.
      To that extent, I would like to read this concurrent resolution about Huntington's Disease which I have introduced in the House of Representatives.
      "Concurrent resolution. Whereas about 30,000 people in the United States suffer from Huntington's Disease; whereas each child of a parent with Huntington's Disease has a 50 percent risk of inheriting the illness; around 200,000 individuals are at risk; whereas Huntington's Disease results from a genetically programmed degeneration of nerve cells in certain parts of the brain; whereas this degeneration causes uncontrolled movements, loss of intellectual faculties, and emotional disturbances; whereas presymptomatic testing is available for those with a family history of Huntington's Disease, and medication is available to help control the symptoms, yet there is no treatment to stop or reverse the course of the disease; whereas Congress as an institution and Members of Congress as individuals are in unique positions to help raise public awareness about the need for increased funding for research, detection, and treatment of Huntington's Disease and to support the fight against this disease:
      "Now, therefore, be it resolved by the House of Representatives (the Senate concurring), that it is the sense of the Congress that subsection 1, all Americans should take an active role in the fight against Huntington's Disease by any means available to them, including being aware of their own family history, being aware of the issues in genetic testing, and advocating for families with Huntington's Disease in their communities and their States;
      "Section 2, the role played by national community organizations and health care providers in promoting awareness should be recognized and applauded;
      "And section 3, the Federal Government has a responsibility to, A, endeavor to raise awareness about the detection and treatment of Huntington's Disease; and B, increase funding for research so that a cure might be found."
      Mr. Speaker, as May marked Huntington's Disease Awareness Month, we must do everything possible to ensure we search out hope for thousands of Americans by finding a cure for this disease.
      I would like to take this opportunity to thank you for your letter. My prayers are with you and your family. I assure you that I will continue my efforts so that in the future a cure may be found for Huntington's Disease. It is an honor to represent the people of the Second Congressional District of South Carolina, and I value your input. If I may be of further assistance, please do not hesitate to contact me.

Very truly yours,

Member of Congress
2405 Rayburn House Office Building
Washington, DC 20515
Ph: 202-225-2452
Fax: 202-225-2455

- published -0-7--2002