Huntington's Disease Society of America
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My mom had HD and she was very symptomatic during every memory I have of her. When I was eleven, and she was 41, she had to leave our home and go to a state hospital. She died there when I was 12, and she was 42. This was in 1974. HD continued to affect my life in a significant way. I was affected by mom’s suffering and death, as well as living with being at risk. Predictive testing was not available when I married and we decided to have children and “play the hand that God dealt us”. This became hard to do. All of my life decisions were being made on the possibility of me getting HD. I eventually tested negative for HD.
I was relieved for myself and my children. But I was so upset about those still affected, including my brothers. I became passionate about becoming involved to fight HD. I wanted to start a peer led support group in WV. It would be the first and only in the state. But I felt afraid, and too alone with it. I eventually did start the group and I am so proud of all of our members and care very much about every one I’m meeting. Little did I know, I am very much…not alone! I have received support from people at the HDSA, the Cincinnati Chapter, Indiana University Center of Excellence, the Regional Program Manager for HDSA and many others. I believe the members of our group are supporting each other beautifully. We had our first annual “Dine for a Cure” fundraiser last year to raise money and increase awareness. For those who would like to do something, but are hesitant to start, go for it. You will not be alone.
In loving memory of Nadira Farha Neccuzi