These influencers and advocates have resources, education, and (perhaps most importantly) validating, supportive community for people with Parkinson’s and related movement disorders. Start growing your virtual Movement Disorders Ecosystem!
1. Reka Janisse
Reka Janisse is raising three kids and working in the corporate world all while navigating young onset Parkinson’s disease (YOPD). Her pithy videos will empower you with everything from news about groundbreaking studies, research, exercise, Parkinson’s hacks, and how she’s doing her best to manage this disease as a mom and a professional.
2. Allie Signorelli
Perhaps the best thing about Allie Signorelli’s social media content is that she shares her journey authentically—the good, the bad, and everything in between, often with a dose of humor. Follow her journey as a self-proclaimed “feisty advocate,” a mom, and a wife as she tells it like it is and rallies our community to change the trajectory of Parkinson’s disease. Come for the advocacy—and be sure to stay for the occasional, precious photos of Allie’s dog, Bean.
3. Ray Dorsey, MD, MBA, & Michael Okun, MD
Both of these movement disorder specialists deserve their own headline, but we’ve packed a powerful two-for-one punch with this recommendation. Drs. Dorsey and Okun are leaders in their field, often diving into the latest research and breakthroughs and giving you their expert take. Even better, this August, they’ll be releasing their second book together, The Parkinson’s Plan: A New Path to Prevention and Treatment, that will be a gamechanger for all of us as Parkinson’s continues its exponential rise.
4. Jimmy Choi
When Jimmy Choi was diagnosed with young onset Parkinson’s disease (YOPD) at age 27, his first neurologist told him to give up exercise and that he’d be in a wheelchair by age 45. Jimmy listened. For the first few years after his diagnosis, he “did nothing” and eventually walked with a cane. But when he fell down a full flight of stairs while carrying his son, he knew it was time to reclaim his life. Since then, Jimmy—who’s about to turn 50—has competed on NBC’s “American Ninja Warrior” and has inspired the Parkinson’s community across the globe with his feats of strength and endurance. Follow Jimmy for the BEST fitness inspiration (whether you have Parkinson’s or not!).
5. Lucía Ferro
When Lucía Ferro, a Spanish doctor, was diagnosed with Parkinson’s at age 35, she felt alone and estranged from herself. “I always say that a new version of me was born on that day,” she said. Lucía, whose social media is in Spanish, is the founder of Párkinson Joven, a movement of people living with early onset Parkinson’s disease, united to raise awareness, promote research, and advocate for legislative changes that improve lives. More than that, she’s on a mission to help build a global movement and community of support for Spanish-speaking individuals with Parkinson’s. Follow her for empowering and educational content (she’s about to become a neurophysiologist) and great conversations.
6. Kuhan
When Kuhan was diagnosed with Parkinson’s at age 38, he struggled to wrap his head around it and decided to keep his diagnosis hush hush. But when he eventually started meeting others with Parkinson’s and discovered similarities, it changed his outlook and opened him. Today, over a decade later, Kuhan co-hosts a podcast, “Two Parkies in a Pod.” Follow him for Parkinson’s tips & tricks, quick facts, research, and engaging conversations with doctors, scientists, and others living with the disease.
7. Amber Hesford
With wit and a touch of dark humor, Amber Hesford, a single mom who’s living with YOPD, isn’t keeping her experience quiet. She openly shares what living with Parkinson’s is like for her, telling it like it is as if talking to her best friends. (Read our interview with Amber here.) Follow her for hot takes and punchy awareness-raising videos on everything from mothering, working, dating, and just surviving with Parkinson’s.
8. Rachel Dolhun, MD, DipABLM
A movement disorder specialist and lifestyle medicine physician, Dr. Rachel Dolhun’s social media platforms are a wealth of knowledge and practical tips. Follow her for expert videos on everything from Parkinson’s and sleep, to emotional health, travel tips, nutrition, tools for talking to your doctor, and more.
9. Esther Labib-Kiyarash
Not only is Esther, who’s living with YOPD, an unflinching advocate, she does it all with humor and sass. Esther, who’s determined to meet people where they are, especially those with early onset PD who are looking for support in new ways, like on TikTok, never planned on becoming a Parkinson’s social media star. But even as her following has grown, her commitment to sharing honestly and making sure others feel less alone remains at the forefront. (Get her full story in our blog interview.) Follow Esther for great videos and clips from the PMD Alliance-Young Onset Parkinson’s Network podcast she co-hosts, called “Living Well Starts Here.”
10. The Brain Docs
Content from Drs. Ayesha & Dean Sherzai, collectively known as “The Brain Docs,” will fascinate you. Packed with everything you didn’t know—but need to—about the brain, their channel is instantly shareable and engaging. Follow for their short, informative clips; stay for their long-form podcast, “Your Brain On…”
