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Monday, October 17, 2011 – Our incredible special guest is Frances Saldaña Advocacy Chairman for the HDSA OC Chapter; Patient Advocacy Committee Member with the Sue and Bill Gross Stem Cell Research Center at UC Irvine; and she was Keynote Speaker at the World Symposium of the Huntington Study Group is October this year.
Frances’ journey as an advocate for Huntington’s disease patients started thirty years ago, when her husband was given the fatal diagnosis of Huntington’s disease. With very elusive information and no real knowledge of what Huntington’s disease was, her primary concern at the time was simply survival. Beyond that, only the ability to focus on caring for her husband and her three young children remained. Behind her busy life was the subconscious knowledge that her three young children were now “ask risk” for inheriting the fatal disease.
Soon after the death of her husband in 1989, her youngest daughter started exhibiting symptoms of the dreaded disease, and Frances quickly launched an aggressive campaign to bring visibility and to educate the public and healthcare providers about Huntington’s disease. Her advocacy in palliative care, community HD resources, housing, comfort, and meaningful social interaction. This all came together for her as a member of the Peer groups who authored “Lifting the Veil of Huntington’s Disease”, a project supported by the Robert Wood Johnson Foundation.
In 2006 that Frances resigned herself to the realization that the cure would not be here in time to save her children. However, she continues to hold on to the hope for the cure, finding comfort in the knowledge that breakthroughs in research continue at a rapid pace so that her two grandchildren and future generations will never have to face the fatal diagnosis of Huntington’s disease.
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It's good to talk.