The University of California, Irvine has begun posting video interviews with their stem cell institute director Peter Donovan (You can see all of those videos here.). Of the eight interviews, including ones with former CIRM board chair Robert Klein and leading UCI stem cell researchers, one of the most moving is with Huntington’s Disease advocate Frances Saldana.
Saldana lost her husband, one daughter and two of her husband’s brothers to the disease. Her two remaining kids have advanced Huntington’s disease. She now has two grandchildren, both of whom have a 50/50 chance of having inherited the disease. In the UCI video Saldana says:
“This is not an illness that is going to go away once you lose your loved one. It’s going to carry on through the generations. When they do inherit Huntington’s Disease they will lose the ability to walk, to talk and to swallow and they will start to experience atrophy of the muscles which causes spasticity and a lot of pain. It’s very painful.”
Saldana spoke to the CIRM governing board about life with Huntington’s disease back in 2007. Saldana is one of many of the passionate advocates for Huntington’s disease who have spoken with the agency over the years and who have been tireless supporters of stem cell research.
“What I would hope for, if not a cure, is a treatment to alleviate human suffering for our families. I don’t think stem cell research will provide a cure for my two other children, but I have two grandchildren and now they are vibrant and beautiful and I hope they have a full life ahead of them, but we need to have something for them if and when they might be carrying that mutant protein.”
The agency currently funds five awards with a focus on the disease. You see a list of these awards, learn more about Huntington’s disease, and watch a video CIRM produced about the disease on our disease fact sheet.