Congressman/Woman
XXXXXXX
Washington DC 20510Re: May is HD Advocacy Awareness Month
Dear Congressperson XXXXXXX:
I am the (mother / father / sister / wife / husband etc or friend) of a patient who resides in your state (district). My (husband / wife etc) will not be able to support your work in Congress in the coming year(s) as he (she) has died from Huntington's Disease. He (she) was diagnosed with HD (a hereditary degenerative brain disorder that slowly robs the individual of their ability to walk, talk, think and reason) XX years ago but died on XX/XX/XX.I am writing to urge you to support several key issues that affect Huntington’s Disease families and other hereditary and/or neurodegenerative disorders like Parkinson’s and Alzheimer’s disease.
(1) Support the Senate-passed Genetic Information Nondiscrimination Act of 2005 (S.306). The Senate took a historical step forward in helping patients take advantage of America’s advancing medical technologies when they passed the Genetic Information Nondiscrimination Act of 2005. Unfortunately, the same technologies that predict disease through genetic testing and family history can be used to open the door to discrimination.
A bipartisan group of Members of Congress introduced the Genetic Information Non-Discrimination Act of 2005. The Bill H.R. 1227 is identical to S. 306 which seeks to prohibit improper use of genetic information for workforce and insurance decisions.
(2) Support legislation sponsored by Senator Bingaman (D-NM) to amend Title II of the Social Security Act (S.2566) to phase out the 24-month waiting period for individuals who receive Social Security Disability (SSDI) benefits to qualify for Medicare coverage, as well as to eliminate any waiting period for those individuals with life-threatening conditions such as HD. For the rare disease community, it is a fast-track provision that will allow our family members to get immediate coverage before the waiting period phases out.
(3) Support legislation that will increase funding to the National Institute of Neurological Disorders and Stroke (NINDS) of the NIH which conducts research for Huntington’s Disease (HD). Funding to find a cure for this devastating disease can be increased and a potential cure found. Please help me (my family member / friend) to fund the research necessary to find a cure for Huntington's Disease so you can continue to benefit from my (my family member / friends) support of your work in Congress.
Thank you for your support of HD Awareness month. If you require more information about Huntington's Disease or HD Awareness month, please do not hesitate to contact the Huntington's Disease Society of America by calling 800-345-HDSA or visit the national website at www.hdsa.org.
Sincerely,
XXXXXXX
_____________________________________________
SAMPLE LETTER TO CONGRESSPERSON (From someone living with HD)
Date:Congressman/Woman
XXXXXXX
Washington DC 20510Re: May is HD Advocacy Awareness Month
Dear Congressperson XXXXXXX:
I am a patient (family member of a patient / friend of patient) who resides in your state (district). There is a strong possibility that I (they) will not be living to support your work in Congress in the coming year(s). I (they) have been diagnosed with Huntington's Disease, a hereditary degenerative brain disorder that slowly robs the affected individual of their ability to walk, talk, think and reason.I am writing to urge you to support several key issues that affect Huntington’s Disease families and other hereditary and/or neurodegenerative disorders like Parkinson’s and Alzheimer’s disease.
(1) Support the Senate-passed Genetic Information Nondiscrimination Act of 2005 (S.306). The Senate took a historical step forward in helping patients take advantage of America’s advancing medical technologies when they passed the Genetic Information Nondiscrimination Act of 2005. Unfortunately, the same technologies that predict disease through genetic testing and family history can be used to open the door to discrimination.
A bipartisan group of Members of Congress introduced the Genetic Information Non-Discrimination Act of 2005. The Bill H.R. 1227 is identical to S. 306 which seeks to prohibit improper use of genetic information for workforce and insurance decisions.
(2) Support legislation sponsored by Senator Bingaman (D-NM) to amend Title II of the Social Security Act (S.2566) to phase out the 24-month waiting period for individuals who receive Social Security Disability (SSDI) benefits to qualify for Medicare coverage, as well as to eliminate any waiting period for those individuals with life-threatening conditions such as HD. For the rare disease community, it is a fast-track provision that will allow our family members to get immediate coverage before the waiting period phases out.
(3) Support legislation that will increase funding to the National Institute of Neurological Disorders and Stroke (NINDS) of the NIH which conducts research for Huntington’s Disease (HD). Funding to find a cure for this devastating disease can be increased and a potential cure found. Please help me (my family member / friend) to fund the research necessary to find a cure for Huntington's Disease so you can continue to benefit from my (my family member / friends) support of your work in Congress.
Thank you in advance for your support of HD Awareness month. If you require more information about HD or HD Awareness month, please do not hesitate to contact the Huntington's Disease Society of America by calling 800-345-HDSA or visit the national web site at www.hdsa.org.
Sincerely,
XXXXXXX
______________________________________________