November 10, 2021 — The Huntington’s Disease Society of America (HDSA) applauds efforts by Chairman Richard Neal to fight for the inclusion of paid family and medical leave in the Build Back Better Act. After significant negotiation, the House version of the bill includes a provision for four weeks of paid leave for individuals to use as parental leave, caregiving leave or medical leave as needed per year, as well as job protections for those utilizing the benefit.  

“Huntington’s disease puts an overwhelming burden on families and care partners as they try to ensure they and their loved ones get the care, services and assistance they so desperately need,” said Louise Vetter, President & CEO of the Huntington’s Disease Society of America.  “Currently, HD families have to weigh caring for their loved ones against losing their employment and their financial security in order to take the time needed to meet the needs of their family members with Huntington’s disease. It is an impossible choice, and we applaud Chairman Neal for fighting for families like ours impacted by Huntington’s with the inclusion of paid family and medical leave in the Build Back Better Act.” 

Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes HD. Today, there are over 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.  

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The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD.  From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families. To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.hdsa.org or call 1-800-345-HDSA.