My PD Story
Rian Julka
In the brisk winds of the Windy City, my world shifted at the tender age of 12 when my mother received a life-altering diagnosis — aggressive Young-Onset Parkinson's Disease (YOPD) at just 39. Witnessing her daily struggles and noticing the subtle changes in her laughter and zest for life, I couldn't comprehend the gravity of the situation back then. Little did I know, this pivotal moment would set the stage for a transformative journey.
Our family relocated to the city that never sleeps, NYC, just as the COVID-19 pandemic took hold. At 14, I found my mother grappling with the challenges of Parkinson's without her usual support system. As a remedy for my own challenges and a way to support my mother, I delved into cross-country running, seeking solace on outdoor tracks. I also initiated my mother's "marathon" training, a seemingly audacious feat given her struggle to walk a few steps.
She began to receive expert Parkinson’s care at Columbia University Irving Medical Center, a Parkinson’s Foundation Center of Excellence. Her doctors and others in our new Parkinson's disease (PD) community told us to reach out to the Parkinson’s Foundation. We quickly took advantage of online classes, organized walks, fundraising events and downloadable books. They have incredibly useful resources and information for both people with YOPD and PD.
She raised thousands for Parkinson’s Foundation when she ran as a Parkinson’s Champion! Crossing the finish line at the NYC marathon in nine odd hours with an Achilles guide, became a powerful testament to her resilience and determination, chronicled by the Brian Grant Foundation in "We are the Elites.”
Fueled by a desire to empower not only my mother but countless others facing similar battles, I committed myself to making a difference. Last year, at age 16, I launched Moversandshakers.info, a website providing information, community and hope for people with Parkinson's. The platform features weekly podcasts, lifestyle tools, clinical trial details, and QR-code-based PD training for first responders, offering a comprehensive resource and community hub for patients and caregivers alike. Additionally, I design and distribute free PD button kits and lanyards for public awareness of hidden disabilities.
The genesis of Movers and Shakers emerged from qualitative research conducted with those who attended the 6th World Parkinson Congress in Barcelona, Spain where people with PD and caregivers helped identify research and support gaps especially, for those in marginalized communities. Recognizing the need for systemic change, awareness and education, I transitioned from digital platform creator to founder of HOPE (Health, Outreach, and Parkinson’s Empowerment) in the winter of 2023. HOPE focuses on building a register of people with Parkinson's and advocating for policy change. This initiative aims to connect local PD communities, targeting under-represented minorities, for events, connections, and trials.
Currently, my relentless effort to push for policy change involves engaging elected New Jersey Representatives at the Capitol to co-sponsor the National Plan to End Parkinson’s Act (H.R.2365/S.1064). Having successfully garnered support from Senator Booker and Congresswoman Wexton last year, I am now in negotiations with other NJ congressional members for their vote and support.
My mom's diagnosis, a seismic event in our lives, became a catalyst for meaningful change. It transformed me into a compassionate advocate, a dedicated website creator, a social justice champion, and, above all, a son fighting for his mother's future and the futures of countless others entangled in the clutches of Parkinson's.
The journey continues, marked by a sincere promise to her tribe, that innovation, resilience, voice, advocacy and an unwavering commitment to fostering hope will always be my passion and priority.
You can read my full story on my blog.
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