[Congressional Record (Bound Edition), Volume 156 (2010), Part 7] [Extensions of Remarks] [Pages 8997-8998] [From the U.S. Government Publishing Office, www.gpo.gov]HONORING THOSE LIVING WITH AND AFFECTED BY HUNTINGTON'S DISEASE ______ HON. BRIAN P. BILBRAY of california in the house of representatives Monday, May 24, 2010 Mr. BILBRAY. Madam Speaker, today I rise to honor the thousands of Americans living with and affected by Huntington's disease. As you know, May is Huntington's disease awareness month. HD affects over 250,000 Americans, 117,000 in my great state of California. According to the National Institutes of Health, NIH, ``Huntington's disease results from genetically programmed degeneration of brain cells, called neurons, in certain areas of the brain. This degeneration causes uncontrolled movements, loss of intellectual faculties, and emotional disturbance. HD is a familial disease, passed from parent to child through a mutation in the normal gene. Each child of an HD parent has a 50-50 chance of inheriting the HD gene. If a child does not inherit the HD gene, he or she will not develop the disease and cannot pass it to subsequent [[Page 8998]] generations. A person who inherits the HD gene will sooner or later develop the disease. As a Cochair of the Congressional Biomedical Research Caucus, I urge my colleagues to support efforts by the NIH to eradicate this horrible condition. Not only are people with HD living with constant discomfort, they are also shortchanged when it comes to receiving social security disability benefits. Individuals living with HD are continually denied disability social security benefits because of outdated medical guidelines that require a 2-year waiting period before the accrual of benefits can begin. These fine Americans have paid into the system and they should have access to these benefits. For most people a 2-year wait is nothing, for patients suffering with HD it is a death sentence. In an effort to end this discrimination, I have joined with my colleague Bob Filner (D-CA) in sponsoring H.R. 678 The Huntington's Disease Parity Act of 2009. This legislation will revise the outdated social security benefit formula and allow people living with HD to begin receiving their benefits immediately. I would be remiss if I did not mention the yeoman's work of Mr. Allan Rappaport and Ms. Misty Oto. These wonderful, dedicated Americans are fighting hard every day to make sure one day HD is nothing more than a footnote in a medical school text book. Finally, I would like to thank the Huntington's Disease Society of America, HDSA. HDSA is a national, voluntary health organization dedicated to improving the lives of people with HD and their families. This wonderful group promotes and supports research and medical efforts to eradicate Huntington's disease as well assists families dealing with HD all the while educating the public and health professionals about this condition. Colleagues of the House of Representatives, I urge you to support H.R. 678 and work with me to end the discrimination of HD patients. ____________________