In the 1980s, Jo Rosen’s mother and then fiancé were both diagnosed with Parkinson’s disease. As the primary caregiver, Rosen struggled to find answers and resources, so, in an effort to help herself and others, she started Parkinson’s Resource Organization (PRO). Today, the non-profit assists over 80,000 people with the disease, in addition to their caregivers.

After 34 years as leader of the organization, Rosen is stepping aside to expand her humanitarian efforts around the cause.

“When I started Parkinson’s Resource Organization, I knew next to nothing about Parkinson’s or neurological diseases, and I needed to know,” she reflects. “At that time, doctors, scientists and others ‘in the know’ that I reached out to for help and information wouldn’t give me the time of day. To them, I was ‘just a caregiver.’” She knew that people responded to titles, so she founded the organization and made herself president.

Located in Indian Wells, PRO offers both in-person and virtual support groups on mindfulness, grief, movement practices and more along with a robust Wellness Village Resource Directory connecting Parkinson’s families with services and providers.

“During all my years at the helm of PRO, I have fielded phone calls from people on the brink of bankruptcy, on the brink of suicide, battling homelessness, battling pain, battling loneliness and even those who were financially successful but had no idea where to turn for help,” she says. “At the same time, I watched billions of dollars diverted to as-yet-unrealized research for a cure, while direct human service endeavors like ours scrape by on pennies.”

Rosen is proud that she and her team have been able to keep the organization going through many challenging times including a recession and the pandemic. Because they were able to pivot and expand their online presence during the pandemic, the organization experienced its largest growth and is at its strongest financially.

Eileen Lynch now leads as PRO’s new executive director and Rosen remains committed to the cause. She has already started working with independent scientists developing a promising new therapy. She hopes to travel and finally enjoy some much needed R&R before embarking on her future goals which may include a TED Talk or book.

“It is with much pride that I leave and with purpose that I look forward,” she shared. “As I said 34 years ago, I’d like to fix this thing and will continue working to make this happen before I leave this world.”

PRO is honoring Rosen with a brunch on Sunday, March 10, at the Classic Club and all are welcome to attend. Tickets are $50 and may be purchased at www.parkinsonsresource.org.