Nearly everyone affected by HD has trouble obtaining disability benefits. HDSA is leading a national campaign to address this problem, and we need your help!

A bill in Congress, HR 678, The Huntington’s Disease Parity Act of 2009 would revise the current Social Security Administration (SSA) guidelines for determining disability caused by HD. It would also eliminate the two-year waiting period to receive Medicare benefits after a disability determination is made by SSA. If enacted into law, HR 678 would significantly improve the lives of everyone affected by HD.

Support our grassroots HD Movement! Take 2 minutes right now to contact your Representative about HR 678.

Does your Congressman support HR 678? (Click here to see if your Rep is on board). So far, over 60 Representatives have agreed to cosponsor HR 678, largely because their constituents have asked them to support it. By contacting your Representative, sharing your personal story, and asking him/her to cosponsor HR 678, you can join our cause! Click here for a sample letter to send to your Congressional representative.

If your Representative is already a co-sponsor, congratulations! Now invite your family and friends to join our effort by forwarding this message to them.

Since we need support from both houses of Congress, you can also send an email asking your two Senators to introduce the Huntington’s Disease Parity Act in the Senate. Click here for a sample letter to send to your U.S. Senators.

Change cannot occur without your help. Persistence is key if we want change. Please join the HDSA advocacy movement today.

If you would like more information about HDSA Advocacy, HR 678, or help in scheduling a home office visit with either your Rep or Senators, please contact Jane Kogan at the HDSA national office at or visit the HDSA Advocacy Page.






For information click here.


The Huntington’s Disease Parity Act (HR678) has almost 150 cosponsors! When enacted, this piece of legislation will make it easier for HD families to receive Social Security Disability and Medicare Benefits. Thanks to Illinois Representatives Mark Kirk, Jesse Jackson, and Daniel Lipinski for adding their names to our ever growing list of cosponsors. But there are still 12 members of Congress from Illinois who have not agreed to cosponsor HR678.

In the next few weeks, HDSA will announce the introduction of the Huntington’s Disease Parity Act in the Senate, and we’ll need your help to get your Senators, Richard Durbin and Roland Burris , on board! So please mark your calendars for National Call in Day on Tuesday, October 19, We’ll be asking you to call your local Senators, as well as the remaining Representatives who are not yet cosponsors, to ask for their support of the Huntington’s Disease Parity Act.

If you have any questions, please don’t hesitate to contact Jane Kogan at, or by phone at 800-345-HDSA (4372), at extension 226.