In 2011 the Huntington's Disease Parity Act was re-introduced in the House of Representatives (H.R. 718), but also introduced (for the first session) in the Senate (S648).

The HD Parity Act calls for the Social Security Administration to update the  criteria used to determine eligibility for disability for Huntington's disease.  Currently, the criteria is over 30 years old, and does not reflect the current research on the impact of the disease. As a result, many people are often denied disability, although unable to work due to the effects of the disease. 

Secondly, the Parity Act requests the 24month waiting period currently in place (once disability is approved) be waived.  This will prevent any lapse in coverage for much needed medical care!


Chapter EXCEEDS petition goal!

One of the first tasks of the new Chapter for 2011 was a petition drive to gain signatures and spread awareness about the HD Parity Act.  We set a goal of 3000 Hoosier signatures by March 1st.  We are pleased to announce we exceeded our goal!  We are not just excited about the number of signatures obtained, which will help us communicate the necessity of the Parity Act, but perhaps even more importantly was getting out and spreading awareness of Huntington's Disease!!  As a result of the Advocacy efforts that are underway in our state, the Indiana Chapter was honored at the HDSA Annual Convention in June with an Award for Advocacy!


A HUGE thank you to all who helped make the petition drive a huge success!


The petition goal was exceeded, so what's next?  Contacting Congress!

Have you contacted your U.S. Representative in your district, or Senators Lugar and Coates to request their co-sponsorship of the Huntington's Disease Parity Act?

The State of Indiana has 9 US Congressional Districts, each represented by a member of the US House of Representatives.  In addition, Indiana has 2 United States Senators. 

Please remember, these people were hired to represent YOU! 

Below is a list of the names of the Congressmen, and the Districts they represent.

District 1:  Rep. Peter Visclosky (D)

District 2:  Rep. Joe Donnelly (D)

District 3:  Rep. Marlin Stutzman (R)

District 4:  Rep. Todd Rokita (R)

District 5:  Rep. Dan Burton (R)

District 6:  Rep. Mike Pence (R) 

District 7:  Rep. Andre Carson (D)  (current co-sponsor of HR 718)

District 8:  Rep. Larry Buschon (R)

District 9:  Rep. Todd Young (R)

To determine the appropriate Representative for your Congressional district, please visit

The State Senators from Indiana are:

Sen. Richard Lugar (R)

Sen. Dan Coates (R)



We are looking for patients, families, etc. who are interested in sharing their voice with our US Congressional Representation from Indiana.  If you are interested in scheduling a meeting with your Representative, or a State Senator, please let us know.  If you need help determining our district/Representative, contacting their office, or general questions on Advocacy, please contact Melanie Nagy, Advocacy Chair for IN at, or Jane Kogan at the National Office at


Please help us educate Congress about Huntington's disease and the importance of the HD Parity Act!


For information click here.



HD Clinic at IU Health