May is Huntington’s Disease Awareness Month. While I was starting to write this week’s column, my wife, Jill, received some devastating news: Her second cousin, Pamela Averman, had passed away from pneumonia on April 28.
Because this is a Huntington’s disease column, I should share with you that Pam was not gene-positive for the disease, but her mother was.
In the past, I have written about caregivers like my mother-in-law and me, but another group is part of our community: those who don’t live with someone who has the degenerative disease but who are equally invested in finding a cure.
When I married Jill, I became aware of a large extended family on both her mother’s and father’s sides. Pam was her father’s cousin, and he was very close to her, particularly because they shared a birthday. Jill grew up knowing her and the extended family well.
Many people have family who are affected by myriad terminal diseases, and some dedicate themselves to finding cures. But the Huntington’s disease community is unlike any other. Multiple generations face the same possible fate, and each knows and loves someone who has the disease. It makes finding a cure more urgent and motivating for everyone.
Pam and her husband, Bill, dedicated their lives to helping those with Huntington’s disease and the people who take care of them. Pam saw herself as a member of the Huntington’s disease family, and with Bill, she served on the board of the Western Pennsylvania Chapter of the Huntington’s Disease Society of America (HDSA) for many years.
Anyone who met Pam knew she was a kind and thoughtful person who became a registered nurse because she wanted to improve people’s lives, especially those diagnosed with Huntington’s. At times, she would reach out to all of us with information she had learned about upcoming HDSA studies or from her trips to the annual HDSA convention.
When Pam talked about Huntington’s disease, she was convinced that one day a cure would be found, and her positivity was infectious. She never gave up hope that one day it would happen, and I pray that we all pick up the torch she carried and work together to find a cure.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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