Last year at this time I wrote and asked you to consider a contribution to the Helen Younger Memorial Fund. In that letter, I talked about raising funds to speed a cure for the estimated one million people affected by FSHD Muscular Dystrophy.
Many of you responded with generous contributions and I am pleased to report that we raised over $100,000 in Helen’s memory! I want to thank all of you who contributed and update you with happenings of the last year.
Our son, David, was accepted into a Phase 2 Clinical Trial of a drug called losmapimod developed by Fulcrum Therapeutics. You can read about the drug at: https://www.fshdsociety.org/2020/01/13/fulcrums-approach-to-treating-fsh-muscular-dystrophy-video
David travels to Kansas monthly as part of the program. Our family is extremely hopeful and positive that the drug will stop the progression of the disease and allow for regeneration of muscle cells. As we get closer and closer to a drug that works, the FSHD Society will need more funds to make sure that the drug gets into the hands of FSHD patients in a timely manner.
February 20th will mark the second anniversary of Helen’s passing. Those of you who knew her will understand how excited she would be for the prospects of a cure and appreciative of your help.
Helen’s father, Sandy Batkin, passed away October 6 at the age of 96. He was also very involved in the FSHD Society and a donation to the fund in his memory would certainly be appreciated. Helen was his only child, and David his only grandchild, so you can understand how much he tried to help with the cure for this disease.
David, Debbie, Eric and Emma live down in Austin. David is a psychologist and one of his specialties is helping people with chronic illness. Donations to the fund in his name would also be greatly appreciated as would your thoughts and prayers that his treatment is successful.
Here is how to donate*:
- Online, https://www.fshsociety.org/helen-younger-memorial-fund/
- By check made out to the FSHD Society (memo: Helen Younger Memorial Fund) and mailed to FSHD Society, 450 Bedford Street, Lexington, MA 02420; or
- By calling 781-301-7301.
I am grateful to you for your friendship and generosity, as is David, and I know Helen and Sandy are too.
* The FSH Society is a tax-exempt 501(c)(3) organization. Your gift is tax deductible as allowed by law.