What Huntington’s Disease Awareness Month Means to Me
May is Huntington’s Disease Awareness Month, a cause I believe in. So what is Huntington’s Disease What is HD? Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain.
The month means a lot to me because:
–May is when many of the HD organizations in the U.S., come together to promote one idea, Huntington’s Disease Awareness. Help4HD International, Huntington’s Disease Foundation, Hereditary Disease Foundation, We Have A Face, HDSA, The World in HD, join forces, in an unofficial way, and publicize the month using different marketing strategies. With differences put aside, we share a common goal of heightening HD awareness.
During this month, and since there is power in numbers, Huntington’s Disease information is seen on many social media platforms that leads to easier accessibility of resources by Huntington’s Disease families that are critical to caring for their loved ones. John and I felt so alone when we were caring for his three sisters, who had Huntington’s Disease, in the ’80’s, 90’s and early 2000 since there were no resources available.
–May is when I get to participate in HDSA Northern California Chapter Annual Convention/Education Day, and, with TEVA Pharmaceuticals educational grant, the Chapter is fortunate to offer it free to families. At the convention, I’m privileged to meet folks who are bravely fighting Huntington’s Disease, and their carepartners who are lovingly caring for a child, spouse, mother, etc.
–May is the month I remember Lora, Marcia and Cindy in everything I do for the Huntington’s disease community.
–May is the month I give thanks for John’s negative test results (2016) and how our children do not have to live a life at risk for Huntington’s disease.
We Can Never Lose Hope…………………….
Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website https://www.theresecrutchermarin.com & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.