Dr. David Higgins appointed as Patient Advocate for Parkinson’s disease to Stem Cell Agency Board

San Francisco, CA – Seeing his grandmother struggle with the debilitating impact of Parkinson’s disease has had a life-long impact on David Higgins, Ph.D.

“As a young kid in the 1960’s my grandmother had Parkinson’s and I was always struck by how difficult it was to communicate with her, I always felt as a child that it was somehow my fault because I couldn’t talk with her.”

In time Dr. Higgins realized that the problem was not because of him, but because of the disease. He says he also learned another valuable lesson from his grandmother.

“She was in one of the first L-dopa trials (this is a drug that converts into dopamine in the brain, to help counter the disease). I saw how that therapy helped change her life and it gave me my first lesson in how science and scientific research could change someone’s life.”

Watching his mother struggle against and ultimately die from a form of dementia similar to Parkinson’s and then getting his own diagnosis of Parkinson’s has only strengthened his commitment to doing everything he can to battle the disease.

“I probably had symptoms that I was suspicious of for about two years before I was diagnosed. It was a mixed bag because as a scientist I finally had a label for what was going on and I thought at least now I can start fighting it. But the other side of me said “Oh my god I know exactly where this is going.”

His personal experience is one of the reasons why Dr. Higgins has been named as the newest member of the Independent Citizens Oversight Committee (ICOC) the governing Board of the state’s Stem Cell Agency, the California Institute for Regenerative Medicine (CIRM).

The appointment was made by State Controller John Chiang who praised Dr. Higgins for the wide range of attributes he brings to the role: “Diagnosed with Parkinson’s in 2011, his experience with the disease and its impact on a personal level brings a distinct perspective to the ICOC.  Dr. Higgins also brings a broad range of experience from the biotechnology field. As a trained molecular biologist, his involvement in drug development and business operations places him in a unique position, understanding both science and process.”

Dr. Higgins says when he was first approached about the position he was surprised: “I was totally stunned when they called and I told them I wasn’t sure that I was the right person, then they started to explain to me why I was. I was absolutely thrilled and loved learning about CIRM and what the agency is doing.”

It’s easy to see why Dr. Higgins was nominated for the role. He has held positions at several biotech companies, most recently as Head of US Operations for BioMedica, Inc., a UK-based gene therapy company. He is the California Assistant State Director with the Parkinson’s Action Network, and also serves as the President of the Board of Directors of the Parkinson’s Association in San Diego.

“We are delighted to welcome Dr. Higgins to the Board,” says Jonathan Thomas, Ph.D., J.D., Chair of the ICOC.  “He is a powerful and passionate advocate not just for people with Parkinson’s disease but for science in general. He understands on a personal level how important it is for the public to support research trying to find new treatments and cures for currently incurable diseases.”

Dr. Higgins says his personal experience with the disease has clearly influenced his life but does not mean he will focus on that alone: “One thing I feel strongly about is that, yes I’m the Parkinson’s Patient Advocate on the Board, but first and foremost I’m an Advocate for everyone and I want to make sure that we spend our money wisely, and that we use our resources to identify and nurture the most promising stem cell projects across all target diseases.”

Dr. Higgins says he takes up his role with mixed emotions: "I am thrilled to be a part of the CIRM governing Board, but I am also humbled to follow in the footsteps of Joan Samuelson, who has been CIRM’s Parkinson’s Patient Advocate from the beginning. She is a hard act to follow.”

Dr. Thomas echoed those sentiments saying: "Joan set the gold standard for patient advocacy. She was a part of the agency from the very first and her passion, dedication and commitment to helping others was an inspiration to all of us. Joan was always willing to ask tough questions and push us all to do more to speed up the development of new therapies. We are all better for her service, and she will be missed."

Dr. Higgins says his first act, even before being officially sworn in, will be to reach out to the Parkinson’s community in California to get their input and thoughts on what is most needed.

About CIRM: CIRM was established in November 2004 with the passage of Proposition 71, the California Stem Cell Research and Cures Act. The statewide ballot measure, which provided $3 billion in funding for stem cell research at California universities and research institutions, was overwhelmingly approved by voters, and called for the establishment of an entity to make grants and provide loans for stem cell research, research facilities, and other vital research.

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© 2013 California Institute for Regenerative Medicine