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Some advice to the HDSA as it searches for its next leader

Who will become the next president? I’m actually talking about the next president of the Huntington’s Disease Society of America (HDSA), the largest public nonprofit organization dedicated to improving the lives of people affected by Huntington’s disease (HD) through research, education, and advocacy. Louise Vetter served…

The caregiver burden is lessened by meeting others like us

“I wake up panicking and find it hard to unclench the ball of anxiety tightening in my chest.” — Melanie Pearson, from her first blog post about caring for her brother with Huntington’s disease. I understand Melanie’s feelings. Huntington’s has also taken the lives of my dad, grandad, and…

The complexities of living alone with Huntington’s disease

Huntington’s disease presents a complex range of behavioral, cognitive, physical, and psychological symptoms. It poses many challenges to families, friends, caregivers, and people who are living alone with this condition. Huntington’s has taken the lives of my dad, grandad, and great-grandmother. I tested negative for…