We at HDDW are saddened by the death of Marie Portillo, who lived half of her too short life physically dragged down by juvenile onset Huntington's. But according to our good friend Malcolm Casale, Marie's godfather "She had quality of life 'til the end, as she was always cheerful and would join us in singing and readings. Part of this was due to her foundational belief that the cure was becoming available, and that all she had to do was hang on a little while longer."
It's all about Family
Marie's life was blessed by family, two of whom are very special advocates for Huntington's. Both her mother and godfather have worked tirelessly to advance treatments for this disease. Marie, along with her sister and brother are their inspiration.
Frances Saldana, Marie's mother was instrumental in bringing The Huntington's Center of Excellence to Orange County in California. And going beyond her local community, her passionate involvement helped convince The California Institute for Regenerative Medicine (CIRM) to choose Huntington's as a disease focus for the development of stem cell therapy. She was inspiration to local researchers including Dr. Lesley Thompson of the University of California in Irvine. And she was recently honored by the Huntington Study Group (HSG) when she was chosen as one of the guest speakers - along side Judy Roberson another California advocate -- for their Symposium later this month.
Marie was blessed also by the love and care bestowed by Malcolm Casale and his family. Malcolm, though trained as a computer scientist took on a second job, that of research scientist at the University of Irvine whose group helped describe disordered iron metabolism in Huntington's mice.
Models of Courage
We salute Marie, and her family as they mourn her loss. Marie's life gives us a model of courage and hope while battling Huntington's that we all can aspire to. And her family inspires us with the example of just how much a few can accomplish in the war against Huntington's disease.
Marie didn't let Huntington's take her spirit, and she maintained hope that treatments for Huntington's were coming. Her family has not let Huntington's take their spirit either. Our best tribute to Marie's life -- and to her family -- is to work even harder to get those treatments, if not in time for her, for others.