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A tenacious advocate for ALS research

Packard Center Board of Governors member volunteers and contributes to help find a cure
Posted March 4, 2015
Diane Winokur with Packard Center founder and director, Jeffrey Rothstein Diane Winokur with Packard Center founder and director, Jeffrey Rothstein

At the Robert Packard Center for ALS Research at Johns Hopkins, investigators are on the front lines, working tirelessly to find better treatments and, ultimately, a cure for amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. But working just behind the scenes, and making their extraordinary efforts possible, there are people like Diane Winokur.

Winokur, a resident of San Francisco, California, has been a supporter of the Packard Center since its founding in 2000 and has served on the Packard Center’s Board of Governors since 2009. She came to the board with extensive ALS advocacy experience — she worked to help pass a 2004 California stem cell research funding initiative, helped to establish the ALS Treatment and Research Center at the University of California, San Francisco, and served on the boards of numerous prestigious ALS organizations. She currently serves on the governing board of the California Institute for Regenerative Medicine, the organization created by the 2004 California bond measure. Winokur’s determination comes from a personal history with the disease: she has lost two sons, Douglas and Hugh, to ALS.

“When my first son was diagnosed, I went on a mad search, and I’ve been on it ever since,” Winokur says. She studied everything she could about ALS and the current research and treatments available at the time. Early in her search, she learned of the unique efforts of the Packard Center and its director, Jeff Rothstein, MD, PhD, and wanted to get involved.

“From the beginning, the Packard Center has focused on collaboration as a prime requirement for its researchers. This wasn’t always common, but now has become standard, which is very exciting,” Winokur says. 

As a member of the Board of Governors, Winokur meets with the group several times annually, and touches base through conference calls throughout the rest of the year. Together, the group brings diverse skill sets to support the work of the Packard Center, joined by a common cause and passion. For Winokur, this means spreading the word about the importance of ALS research and the efforts of the Packard Center, helping the Center make important connections on the West Coast, attending the yearly research symposium held in Baltimore, and finding new ways to support the researchers of the Center, including providing funding. 

In addition to creating the Winokur Family Research Initiative in 2013 to support research efforts at the Packard Center, Winokur has also recently established a bequest to create an endowed professorship at Johns Hopkins. The Douglas Winokur and Hugh Winokur Professorship for ALS and Neuromuscular Diseases will be stationed in the Department of Neurology, and will support in perpetuity a faculty leader in the field. The first holder of the professorship will be Dr. Rothstein.

Winokur sees the gift as a way to continue her work and honor her sons: “I made this gift because I’m not sure a therapy or cure for ALS will be found in my lifetime, but this way I’ll be keeping at it. At the same time, my boys who suffered through this illness will be remembered.”

Winokur’s work on behalf of the Packard Center continues. She recently attended the Center’s 15th annual research symposium, an event she looks forward to every year, giving her an opportunity to hear investigators from institutions across the country who specialize in neurology, stem cell research, genetics, and other disciplines report on their progress, ask questions, and share information.  It is this collaborative spirit and approach that drew her to the Packard Center and that continues to motivate her own volunteerism there.

“When people across disciplines work together with the same passion for the same cause, they accomplish so much more,” she says.