On 1/1/2020……. I lost my mother, Sharon, due to Parkinson’s disease. I wanted to share my thoughts and ideas on tough topics in caregiving and send thoughts and prayers for others diagnosed and caregivers, so this BLOG was created in their memory.
The Tackling Tough Topics BLOG 26: Advocating Together… All of US?
This blog is dedicated to all those caretakers who care for a loved one with any disease and to those who have been diagnosed. We hear you; we see you, and we will never stop fighting until there is a cure!
99.9 percent of the people I have met on this journey are simply incredible. Yet, there remains a small few who choose to stand alone in this fight—and that is a shame.
This is dedicated to those rare individuals and organizations I have encountered in my time advocating who do not wish to work together toward a Parkinson’s disease cure.
Imagine being told that some people do not want to advocate together for a cure. Those few truly break my heart. We need everyone united, raising our voices together. When we work as one, our reach is greater, our message stronger, and our hope louder.
I advocate voluntarily. I cannot bring my mother back to our family after losing her to Parkinson’s, but I can help ensure others do not feel as lost or alone as we once did. Awareness saves time, builds community, and creates hope—but it takes a village.
Over the past six years, I have had the honor of being a guest on hundreds of Parkinson’s-focused podcasts, learning and teaching together, and reaching those who desperately needed to know they were not alone. I have also interviewed more than 3,000 inspiring people worldwide. That experience has sustained me. A piece of my heart left with my best friend and mother, Sharon, when she lost her battle in 2020.
I never planned to become an advocate. Yet today, this mission drives me—to seek a cure for everyone living with Parkinson’s and for their families, in memory of all we have lost.
What remains shocking and heartbreaking are the few who do not respond, agree but never follow through, or simply refuse to share space with others. Advocacy should never be about exclusivity. Imagine what could happen if we reached even one person who felt isolated or unaware. That single moment could change everything.
Thankfully, these instances are very rare. But when an individual or organization cannot spare a few minutes to support collective awareness, it stands out—and not in a good way.
If we were 100% united, we would be closer to a cure. Instead, I have encountered a small number who make advocacy feel as though it is moving backward rather than forward. Excessive rules, bureaucracy, or forgetting the “little guy” is baffling when the stated mission is a cure. Closed doors contradict public messaging, and selective support fractures the community.
Most advocates and organizations are genuine and extraordinary. This reflection is not about them—it is about the small minority who operate in isolation, contrary to the spirit of collaboration and hope.
It is one thing to value privacy; it is another to actively exclude voices while maintaining a public presence. Advocacy is not about money for me. It is about reaching those who are unaware and supporting families like mine who once felt completely alone.
Had I encountered these few early on, I may never have become an advocate. Thankfully, the positive overwhelmingly outweighs the negative. Still, it leaves a lingering question: why are we not all truly a family in this fight?
Today, I am not diagnosed, and I am no longer a caregiver. Many understandably step away after losing a loved one. I chose not to. The journeys, friendships, and shared strength within this community have been life-changing. That is why it is painful to see even a small number unwilling to stand together.
Even a moment of unity sends a powerful message. Together, we accomplish more. Apart, the finish line moves farther away.
This is a challenge—to open doors, to give others a chance, and to come together, even briefly. A cure requires family, community, and collective effort. Without it, progress slows—and it doesn’t have to.
We should be 100% united in this fight.
We owe it to everyone living with Parkinson’s—and to those we have lost.
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George’s Biography
Dr. George Ackerman is from Brooklyn, N.Y. He now resides in Florida and works in the fields of law, police, and education. George lost his mother, Sharon Riff Ackerman, on 1/1/2020 due to Parkinson’s Disease.
George wanted to honor his mother and continue to help in the Parkinson’s awareness cause, but he did not know how to bring about change. With my family, we started TogetherForSharon® to keep my mother, Sharon Riff Ackerman, ‘s memory alive and share the message of Parkinson’s Awareness and hope for a cure.
Today, https://www.togetherforsharon.com/ reaches thousands of individuals across the country to raise awareness of Parkinson’s disease. George currently interviews individuals throughout the Parkinson’s community, including various foundations, caregivers, and Parkinson’s warriors, to help share their stories and causes.