Orange County Chapter
BECOME AN HDSA ADVOCATE!
Huntington's Disease: The Faces, the Facts, & the Future
Why should you be an ADVOCATE for Huntington’s Disease? Here from some of our HDSA Orange County families to hear why they are advocates… click the link below:
http://www.youtube.com/watch?v=ODQUHfdu6es&feature=youtu.be
Stem Cell Research at UCI:
Click on the link below to view YouTube video of HDSA-OC Chapter founder, Frances Saldana speak on the importance of stem cell research for Huntington’s Disease (May, 2011):
“HD Advocacy” – speaker: Misty Oto, HDSA San Diego Board
Click here to view the video:
(video provided by Gene Veritas)
Misty Oto, the advocacy chair for the San Diego Chapter of the Huntington's Disease Society of America (HDSA), spoke on the topic of "HD Advocacy" at the HD Regional Education Day, March 10, 2012. Held at the University of California, Irvine, the event was organized by HDSA's Orange County, Los Angeles, and San Diego chapters. Misty focused on the HD Parity Act, a bill in Congress that would allow HD patients to obtain their federal disability and Medicare benefits in a more timely manner.
The Huntington's Disease Parity Act has been re-introduced in the House as HR 718, and introduced in the Senate as S. 648.
We need the continued help of our grassroots advocates to re-enlist everyone who cosponsored last year! Go to www.hdsa.org/takeaction to personalize a letter to Congress.
HDSA Advocacy Toolkit Click for documents you can download.
Join HDSA Advocacy on Facebook to keep up with the latest in HDSA Advocacy.
List of HR 718 Sponsors/Cosponsors
List of S. 648 Sponsors/Cosponsors
Click above links for a list of Representatives and Senators who are cosponsoring the Huntington's Disease Parity Act. Then, contact Congress at www.hdsa.org/takeaction!
Huntington's Disease Parity Act Advocacy Toolkit
Featured Document:
Tips for a Successful Meeting: This document outlines how you can meet with Congress locally about the Huntington’s Disease Parity Act, as well as what to say in your meeting.
HD Parity Act Myths vs. Facts This revised handout features an overview of what HDSA and advocates are hearing from Congress
H.R. 718: Click here to download a copy of the House Bill
S. 648: Click here to download a copy of the Senate Bill
House Dear Colleague Letter: This is a letter from the Congressmen Brian Bilbray and Bob Filner, our House Champions, that was circulated through the House asking for support from their fellow Congress Members.
Senate Dear Colleague: This is the letter from Senator Kirsten Gillibrand, or Senate Champion, that was circulated through the Senate.
Costs Associated with the Huntington’s Disease Parity Act: This document provides an estimate of the costs associated with the Huntington’s Disease Parity Act using Congressional Budget Office (CBO) criteria.
Huntington’s Disease Parity Act Fact Sheet: This document is brief overview of the difficulties people with HD face when applying for SSDI and receiving Medicare that explains the need for the Huntington’s Disease Parity Act.
