Page 1 Page 2 Page 3 Page 4 Page 5 Page 6 Page 7 Page 8 Page 9 Page 10 Page 11 Page 12 Page 13 Page 14 Page 15 Page 16 Page 17 Page 18 Page 19 Page 2014 14 2016was a banner year for Advocacy! This year, advocates from all corners of the HD community got engaged in the effort to pass the Huntington’s Disease Parity Act and to see positive changes for families affected by Huntington’s disease. We saw major victories in 2016, including the release and implementation of new guidelines for HD by the Social Security Administration (SSA). As of September 29, 2016 the Social Security Administration will take into account the cognitive and behavioral symptoms of Huntington’s disease when evaluating an application for disability. This is a change we have been working towards for years, and it is an incredible achievement for the HD Community. When the SSA asked for comments to proposed changes to the disability guidelines, more than 33% of the comments received were from HD advocates. That is an incredible number, and without the work of advocates like you we couldn’t have achieved this major goal for the HD community. We have also made major strides ahead in the fight to pass the Huntington’s Disease Parity Act. In the 114th Congress, we signed on 264 bi-partisan co-sponsors in the House of Representatives, including 112 Republicans. These numbers blow all our previous efforts out of the water. With the Social Security Administration’s updates to the guidelines for HD, we have one piece of the puzzle left. We are still working to waive the 2-year Medicare waiting period for folks with HD, and we won’t stop working until we achieve this goal. Advocate efforts in 2016 advocates helped the HD Parity Act clear major hurdles, including receiving a score from the Congressional Budget Office. This procedural roadblock had kept us from moving forward, but because of work from a National Youth Alliance advocate in Michigan, high ranking Members of Congress pressure on CBO to score our bill and they finally came through. With these pieces in place, we are well set up to see the HD Parity Act pass at the beginning of the 115th Congress in 2017. Because advocates like you across the country got engaged in the fight to pass the HD Parity Act, we are confident that this bill will make it over the finish line! Advocates also came out in force to tell the Food and Drug Administration that we need new treatments for HD. In just over one month, almost 4,000 members of the HD Community signed their names and told their stories in a petition asking the FDA to allow SD-809 a speedy and community-focused review. As a result, the FDA has accepted a new review of the drug with priority status. And last but certainly not least, Congress passed the 21st Century Cures Act. This is a bill which the HD community rallied behind with many rare disease organizations, and as a result we will see vast increases in funding to the National Institutes of Health for research into neurological diseases. The legislation also creates a new initiative to better assess the prevalence rates and access to care for rare neurological diseases like Huntington’s disease. Jennifer Simpson, LMSW Manager of Advocacy & Youth Programs HD Voices Heard Loud & Clear ADVOCACY REPORT