By Anne Levin

Rian Julka

Five years ago, Rian Julka’s mother was diagnosed with an aggressive form of Parkinson’s disease (PD). When the pandemic forced the family into lockdown a few years later, Julka — then a middle school student at New York City’s Trinity School — knew that her condition made his family especially compromised.

Julka put together a spreadsheet to help his mother. Through social media, the spreadsheet evolved into a resource for people all over Manhattan who were coping with lockdown. The spreadsheet helped them find what they needed, and post what they could offer others. Word got out, and local press outlets picked up the story. While still in middle school, Julka was recognized for his efforts by Manhattan Borough President Mark Levine.

Since then, the family has moved from Manhattan to Princeton. Julka is a junior at The Lawrenceville School.

The spreadsheet became the inspiration for moversandshakers.info, a website developed by Julka that offers Parkinson’s patients information on medical research, clinical trials, and tips to slow down progression of the disease. The site also sponsors a podcast that is hosted on Apple and Spotify.

“Over the summer, I spent time each day working on this,” Julka said. “But it wasn’t hard, because I’m in touch with my mother’s circle of Parkinson’s people, and I’ve gotten to know what they really need. Especially for younger people like my mother, who was diagnosed at 42, I want to build a community and be a backbone for people with the disease.”

Content for the site has been developed not only from research into Parkinson’s, but from discussions with patients and caretakers who attended the sixth World Parkinson Congress in Barcelona this past July. “Communicating with them was the biggest thing in making this website,” Julka said.

Julka has also designed and posted free PD buttons, kits, and lanyards that people with Parkinson’s can wear to make others aware of their condition. Another of his efforts is the development of a QR code that offers free training for those working with Parkinson’s patients. “These are short modules for first responders, trainers, caregivers, and treatment providers curated from PD experts,” he said.

Julka’s main focus at the moment is gaining sponsorship for a bill known as the National Plan to End Parkinson’s Act. So far, the bill has gained the support of New Jersey Senator Cory Booker and Virginia Congresswoman Jennifer Wexton.

The bill would create an advisory council that would be accountable to Congress, Julka said. “It would look over plans related to Parkinson’s, with the aim of slowing it down and, hopefully, curing it. Even though Parkinson’s is the second most common neurological disorder after Alzheimer’s, and a million Americans live with it, people don’t realize that there isn’t enough attention paid to it. It’s the idea of not just doing this through the website, but through legislation that would make a difference,” he said. “That’s the big end goal.”