One of the unique things about the stem cell agency is the strong presence of patient advocates on our governing board, the Independent Citizens Oversight Committee (ICOC). Out of 27 members on the ICOC ten are patient advocates (bios of all board members are available here). It’s designed to ensure that we never lose sight of our main goal, to help push research that will produce therapies to benefit patients.
Now, we are delighted to welcome a new patient advocate member to our board, Diane Winokur, a tireless advocate for Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s disease) and Mulitiple Sclerosis. Diane has been appointed by Lt. Governor Gavin Newsom who praised her, saying she “is known and respected by her colleagues for her dedication and commitment to the lives of the patients and families who suffer from neurodegenerative diseases.”
Diane’s passion and dedication to finding therapies for ALS comes from her own personal experience with the disease. She lost two sons to the non-familial form of ALS. Her youngest son, Douglas, was diagnosed with ALS in 1995 and passed away in 1997. Her oldest son, Hugh, was diagnosed with ALS in 2005 and passed away five years later.
At a governing board meeting in July of this year she joined other patients and advocates who spoke eloquently and powerfully as they urged the board to approve an $18 million dollar Disease Team research grant to a team from Cedars-Sinai Regenerative Medicine Institute. Their voices were heard. The ICOC approved the grant. You can see that video here:
Driven by her experiences she has been an active leader nationally and internationally in science and biotechnology. She served on the ALS Association's National Board of Trustees for five years and is presently an officer on the Golden West Chapter's Board of Directors.
In a news release welcoming her appointment, Jonathan Thomas, PhD, JD, the Chair of the ICOC said: “We are delighted and honored to have Diane join the ICOC. Her knowledge, expertise and leadership will be a tremendous addition to the ICOC and help guide us in our work.”
Diane replaces David Serrano Sewell, who is stepping down after completing his term and what Lt. Gov. Newsom called his “invaluable service.”
You can read how the ALS community is reacting to the news about Diane’s appointment here: