## Breadcrumb - [Home](/) - [Living with Parkinson's](/living-with-parkinsons) - [My PD Story](/living-with-parkinsons/stories) ## Breadcrumb - [Home](/) - [Living with Parkinson's](/living-with-parkinsons) - [My PD Story](/living-with-parkinsons/stories) # My PD Story ![Rian Julka wearing a movers and shakers shirt](/sites/default/files/styles/470x550/public/images/Rian_Julka.jpg?h=4a7d1ed4&itok=TtMzBwmx) Family Members ## 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](/understanding-parkinsons/what-is-parkinsons/young-onset-parkinsons "Young-Onset Parkinson's") (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](/living-with-parkinsons/finding-care/global-care-network#Centers "Global Care Network"). 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](/resources-support/professionals/online-courses "Learning Lab"), [organized walks](https://movingdaywalk.org/events/), fundraising events and [downloadable books](/resources-support/pd-library "PD Library"). They have incredibly useful resources and information for both people with YOPD and PD. ![Rian Julka and his parents at a race](/sites/default/files/styles/380x361/public/images/Rian_Julka-family_0.jpg?itok=Aylb33mf) She raised thousands for Parkinson’s Foundation when she ran as a [Parkinson’s Champion](/how-to-help/fundraise/create-fundraiser "Create Your Own Fundraiser")! 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 ](https://briangrant.org/our-community/stories/)*[are the Elites](https://briangrant.org/our-community/stories/)*.*” 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](http://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](https://moversandshakers.info/my-blog). ## Related Materials Podcasts ### [ Episode 125: Young-Onset Parkinson’s Disease: Lifestyle, Family, and Counseling ](/library/podcast/125) [Listen Now](/library/podcast/125) Fact Sheets ### [ My Parent Has Parkinson's. What Does It Mean? ](/library/fact-sheets/parent-has-parkinsons) [Read Now](/library/fact-sheets/parent-has-parkinsons) Podcasts ### [ Episode 142: Being There for Your Parent with Parkinson’s ](/library/podcast/142) [Listen Now](/library/podcast/142) ## More Stories from the Parkinson's community ![Anika Ganu performing on a keyboard](/sites/default/files/styles/340x400/public/images/anika-ganu-pd-story-hero.png?h=c9aea1bc&itok=d6Nv7YCl) Family Members ### [ Anika Ganu ](/living-with-parkinsons/stories/anika-ganu) READ NOW ![Christine Shearman and her father](/sites/default/files/styles/340x400/public/images/Christine-Shearman-father.jpg?h=c9aea1bc&itok=-SGVTDQ5) Family Members ### [ Christine Shearman ](/living-with-parkinsons/stories/christine-shearman) READ NOW ![Epin Christensen running](/sites/default/files/styles/340x400/public/images/Epin%20Christensen.png?h=c9aea1bc&itok=T0wG6Wrd) Family Members ### [ Epin Christensen ](/living-with-parkinsons/stories/epin-christensen) READ NOW [VIEW ALL STORIES](/living-with-parkinsons/stories) ### Volunteer Join our team! We rely on the energy, skill, and passion of people like you to make life better for people with Parkinson’s disease (PD). [LEARN MORE](/how-to-help/volunteer) ### Celebrate a Loved One Start a tribute page in honor of a loved one living with Parkinson’s or celebrate their legacy by creating a memorial fundraiser. [START A TRIBUTE PAGE](https://secure3.convio.net/prkorg/site/TR?fr_id=5906&pg=entry) - Share on Facebook - Share on X - Share on LinkedIn