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Become an Advocate

One of the best ways an advocate can help in the fight against HD is by raising awareness among members of Congress. Informing our elected representatives about HD and urging them to take an interest in the issue can lead to their support of legislation favorable to our cause. This type of advocacy may be done in writing by addressing a letter to your representatives in both House and Senate or in person by arranging a visit to the Congressman's office, either in Washington, D. C. or in one of their district offices.

The following link will assist you in identifying your Congressperson in the U. S. House of Representatives and providing contact information:

Write Your Representative - https://writerep.house.gov/writerep/welcome.shtml

The following link will assist you in identifying your Senators and providing contact information:

Write your Senator - http://www.senate.gov/general/contact_information/senators_cfm.cfm

Below are some facts and statistics from the Huntington's Disease Society of America (HDSA), which can serve as talking points when you become an HD advocate.

  • One in every 10,000 Americans has HD and another 200,000 are at risk of inheriting the deadly gene. HD affects as many people as cystic fibrosis or ALS.

  • HD is caused by a defensive gene. HD is a degenerative brain disorder that slowly diminishes the affected individualís ability to walk, talk, think and reason.

  • typically begins in mid-life between the ages of 30-45, though onset may occur as early as the age of 2. Early symptoms 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 increases. Walking, speaking, and swallowing abilities deteriorate.

  • Eventually the person is unable to care for him/herself. Death follows from complications such as choking, infection or heart failure.

  • At present there is no effective treatment or cure. However, HDSA funded researchers have made significant strides in understanding the disease.

  • Recent research suggests some correlation between the length of the CAG repeat and age of onset. The higher the CAG repeat the earlier the age of onset.

  • HD affects men and women equally and crosses all ethnic and racial boundaries.

  • Each child has a 50/50 chance of inheriting the deadly gene. Everyone who carries the defective gene will develop the disease.

  • HDSA was founded in 1967 by Marjorie Guthrie, widow of legendary folksinger Woody Guthrie, who succumbed to complications of HD at the age of 55.

  • HDSA funds both basic and clinical research while providing education and support services to those affected by HD and their families.

  • HDSA is doing its utmost to support research that will yield effective therapies and eventually a cure.

  • Research funds are limited. In order to sustain the momentum of research, the budget for the NIH must be increased so that more dollars can be dedicated to HD research.

  • The National Institute of Neurological Disorders and Stroke (NINDS) at the NIH conducts nearly all of the federally funded HD research.

  • HDSA and its thousands of advocates in every state actively support the Genetic Information Nondiscrimination Act, the need to increase funding to the NIH to support more HD research, legislation to eliminate the 2 year waiting period for Medicare benefits and efforts to protect Medicaid benefits.

For updates and alerts concerning legislation that may affect HD patients and families, please visit the HDSA website.

Thank you for your support!

These pages were created and are maintained by Alice Manfredini © 2011. All rights reserved. Original images and/or text on this site may not be reproduced without written permission from the copyright owners and/or the webmaster.

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