In a previous blog, I wrote about Social Security Disability Insurance and the difficulty Huntington’s disease (HD) families experience when applying for benefits and how for a HD family, who might have two (2) or more family members struggling with the disease, disability dollars are essential for their financial survival. https://hdsa.org/find-help/healthcare-and-future-planning/disability-chat/
Applying for Social Security: https://hdsa.org/find-help/healthcare-and-future-planning/disability-benefits-and-hd/disability-support/
I know a family in town where multiple members are struggling with HD; mom and three (3) adult children who have Juvenile Huntington’s disease. The father/dad, a physician is still working, and is the caregiver for his loved ones at home. To have disability benefits for these four loved ones is, no doubt, helpful.
Another family challenged by HD is the O’Donnell Family. A film by Rae Maxwell and produced by HDSA, Her Mother’s Daughter, introduces the world to Kathi O’Donnell and shows the devastating impact that Huntington’s disease (HD) & juvenile Huntington’s disease (JHD) has had on the O’Donnell family. The film is a window into Kathi’s inspiring journey as a caregiver as we see the different stages of HD & Juvenile Huntington’s disease – a rare form of HD that progresses more rapidly than adult onset.
To watch the film, click here. https://youtu.be/zXfDJ2aW4hw
We Can Never Lose HOPE……
I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to the disease. As of January 1, 2020, a HDSA San Francisco Bay Area Affiliate will begin operating. Amy Fedele is the Co-Chair, I’m the Chair. The Stanford and UCSF Centers of Excellence Teams are involved and it is our hope to increase our presence in the SF Bay Area that has a population of 7.1 million.
My author website is: https://www.theresecrutchermarin.com
You can read about my HD journey and the book I published, Watching Their Dance. 100% of the profits are being donated to the nonprofit, HDSA.