Woody died from HD complications when he was only 55 years old, but the Guthrie family legacy lives on at HDSA to this day. HDSA was founded in 1967 by Marjorie Guthrie, the wife of legendary folk singer Woody Guthrie. From community services and education to advocacy and research, HDSA is the worldвЂ™s leader in providing help for today and hope for tomorrow for people with HD and their families. The HuntingtonвЂ™s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. The symptoms of HD are described as having, ALS, ParkinsonвЂ™s and AlzheimerвЂ™s вЂ“ simultaneously. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes HD. It deteriorates a personвЂ™s physical and mental abilities during their prime working years and has no cure.

HuntingtonвЂ™s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. вЂњIвЂ™m happy to see this Committee take a serious look at the barriers to care for individuals suffering with such horrible diseases like HuntingtonвЂ™s Disease, and I hope we can finally deliver the stability and certainty these families deserve by passing the HD Parity Act.вЂќ ItвЂ™s critical that Congress ensures our policies make it easier for them to receive the care they need,вЂќ said Congressman Adam Kinzinger. вЂњIndividuals and families battling HuntingtonвЂ™s Disease face an overwhelming number of unimaginable challenges. For Americans facing this difficult diagnosis, we must make sure their lives as comfortable as possible.вЂќ Kinzinger and I continue to push our bipartisan, bicameral fix to allow HuntingtonвЂ™s sufferers to get their care faster. Currently, the waiting periods for SSDI and Medicare coverage for HuntingtonвЂ™s sufferers is a cruelly unnecessary gap. They deserve all the support our government can provide them. вЂњThe physical and emotional toll on victims and their families is enormous. вЂњHuntingtonвЂ™s is a dreadful disease that leaves a devastating impact,вЂќ said Rep. Passage of the HD Parity Act is something Congress can do right now to help families like KalaвЂ™s.вЂќ вЂњFrom the high cost of medicine to the scarcity of clinically relevant endpoints, HD families face overwhelming challenges accessing care. вЂњOn behalf of families affected by HuntingtonвЂ™s disease, HDSA is grateful for the SubcommitteeвЂ™s attention to advancing meaningful treatments for these neurodegenerative diseases,вЂќ said Louise Vetter, President & CEO of the HuntingtonвЂ™s Disease Society of America. Congress made an exception for patients with ALS and the same should be done for patients with HD.вЂќ вЂњEven though HuntingtonвЂ™s Disease is on the Social Security AdministrationвЂ™s compassionate care list, HD families often spend years battling against an uninformed system that does not recognize or understand HuntingtonвЂ™s Disease,вЂќ says Booth in her written testimony. The HD Parity Act will waive the two-year Medicare waiting period, as well as waive the five-month benefit waiting period for individuals with HuntingtonвЂ™s disease (HD) accessing Social Security Disability Insurance (SSDI). Kala Booth, an HD patient and caregiver, will testify to the distinct challenges of living with HD, its multi-generational impact, and the importance of improving access to vital health benefits as outlined in the bipartisan HuntingtonвЂ™s Disease Parity Act (H.R. Washington, DC (July 29, 2021) вЂ“ The HuntingtonвЂ™s Disease Society of America (HDSA) applauds the House Energy and Commerce Subcommittee on Health for holding a vitally important hearing today that will spotlight HuntingtonвЂ™s disease (HD) - a rare, inherited, neurodegenerative disease whose patients are uniquely disenfranchised by the current health care system. HDSA Applauds E&C Subcommittee for Highlighting Burden of HuntingtonвЂ™s Disease, Reiterates Call to Pass Bipartisan HD Parity Act HD Patient Kala Booth Urges Passage of HD Parity Act to Fix вЂњBroken SystemвЂќ for HD Patients.

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