We were lucky to catch up with Rian Julka recently and have shared our conversation below.
Alright, Rian thanks for taking the time to share your stories and insights with us today. What’s been the most meaningful project you’ve worked on?
During middle school, my mother was diagnosed with an aggressive onset of Parkinson’s disease, abruptly reversing the roles of caretaking within our family overnight. These challenging years were further compounded by the onset of the Covid-19 pandemic, which hit hardest in the bustling epicenter of Manhattan, where we resided. Surrounded by the chaos and uncertainty, at a time when for every two ambulances, a morgue truck followed, it was the Manhattanites who rescued me and became my lifelines. Reluctantly, I began to connect with the people around me—I had no other option. From my mother’s neurologists to my father’s colleagues at the travel desk, from ailing neighbors to schoolmates. At the tender age of 13, armed with no prior experience in website development, I took a grassroots approach to community organizing. I created simple sign-up sheets for ‘needs or wants’ and plastered them across elevators, apartment buildings, co-ops, and street corners, all while masked and adhering to safety protocols. Within just three days, over 240 volunteers spanning from West 53rd Street to West 179th Street had signed up to assist with errands, groceries, pet walks, and pharmacy pick-ups for those who were compromised and unable to venture out. The original list, which offers a glimpse into how the city came together in their hour of need, is a testament to the collective effort — https://shorturl.at/mpqtE. This effort gained further traction as local and national news picked up the story. So I made the platform Bi-lingual (English and Spanish). I expanded my community service initiative, from just Upper East and Upper West side to all 5 boroughs of NYC. In first 18 months, it helped over 6,800 compromised individuals and families, across 3 NYC boroughs, we still struggled with Staten Island and Queens. It lasted two plus years, and based on sign-up data, it helped 11,450 odd families and hundreds of individuals across all boroughs. I was also the youngest member to start and lead, the NYC chapter for Students Against Corona, a student based global grassroots movement, homed in Oxford University, with volunteers from 57 nations aiming to bring students, as allies together to create a common platform to spread awareness about COVID-19, share ideas and collaborate in tackling the pandemic both online and offline. It helped over 110,000 people, BBC and Utrecht University recognized and commended this work. I became the youngest person to receive Mayoral Recognition from Eric Adams for my crowdsourcing platform and website that helped thousands of New Yorkers during Covid. Manhattan Borough President Mark Levine also awarded me for my platform to help ‘Countless Manhattanites’ during Covid. But I think it was not me who deserved these awards, the New Yorkers did. This project, this grassroots movement that organically snowballed into thousands, taught me a thing or two about the resilience and compassion of New Yorkers and the power of teamwork.
Great, appreciate you sharing that with us. Before we ask you to share more of your insights, can you take a moment to introduce yourself and how you got to where you are today to our readers.
I was 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 love 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. I created Movers and Shakers (https://moversandshakers.
Let’s talk about resilience next – do you have a story you can share with us?
As a High school junior, I only get spare time post homework, test prep and school sports. I also essentially take care of my mom, as my dad travels a lot for work, and she can only walk if her medicines kick in, every 2-3 hours. Hence, I struggled a bit with HOPE (Health, Outreach, and Parkinson’s Empowerment), a 501(c) non-profit I started this year. This is my capstone project, and my goal for this non-profit has always been two-fold:
1) Help build a register of Parkinson’s disease sufferers (focus on YOPD) in Princeton and neighboring suburbs/areas. We have already commenced NYC YOPD register about 9 months ago. This will serve to connect local PD communities, especially the URMs (under-represented minorities) for targeted events, clinical trials and social connections.
2) Platform also serves as a quantitative and qualitative tool, in my relentless effort to push for policy change, by 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 the support from Senator Booker and Congresswoman Wexton last year, I am now negotiating with other NJ congressional members for their vote/support.
It wasn’t easy to register, build, or do paperwork for the non-profit and to knock on senators and congressmen who barely respond, never mind building local communities. It tests me everyday, but my frustration is not even a fraction of what my mother goes through daily, so I move on.
What’s a lesson you had to unlearn and what’s the backstory?
The Windy City. I was 12, and my world was rocked one October afternoon by my mum’s diagnosis of aggressive Young Onset Parkinson’s Disease at just 39. Sure, I saw her struggle often, exhausted too, and noticed she wasn’t laughing as much. Or planning holidays, events, or coaching our team or help us build planes for the Science Olympiad for that matter, like she used to. I knew something was off but I didn’t quite add it all up back then. Come Covid, we had moved to the city that never sleeps. In the heart of NYC, my advocacy for Parkinson’s unfolded when, at 14, I found my mom hitting rock bottom without her usual support system. The city that never sleeps became the backdrop for a transformative period in my life. My journey as a cross-country runner at Trinity school, began with finding solace and meditation in outdoor tracks. Central Park became my happy place. I saw all kinds of folks, run, jog and walk, punch above their weight, in-spite of there age, ability or lack of, and I learnt pretty early not to let my mom give up or give in to her progressing symptoms, instead, fight it more than she even thinks she’s able. So when she fell down, trying to walk a few steps, from the kitchen island to the counter, crazy as it may sound, I whispered to her, lending my hand “what should a person who cannot walk a few steps do? “ She looked lost and stared at me intently for an answer. I said “I’m signing you up for a marathon”. Yes, with those words right there, I promised to help her after my practices, to get her started. I signed her up with an Achilles guide and they took on the impossible with me, without once hinting at the absurdity of it. Her guide, Shannon, became her north star, and the two of us took turns to walk with her, one mile at a time. We had only 5 weeks to train her for the 26.2 miles and then some. Each day brought its own set of obstacles. Tremors, stiffness, freezing, gait issues, dystonia….First two weeks were brutal. Her sore muscles begged for help, yet with each slow crooked step, crunching those autumn leaves, she stuck to my path, letting go of pain, in bit and bobs, past the iconic reservoir, past the cherry trees, past the fountain, Cleopatra’s needle, the swamp, the boathouse…in exchange or a smile or a nod from me, fellow Achilles athletes on blades, crutches or wheelchairs, park goers, couples, dogs…. we sure weren’t alone in this journey. Her training consisted of a combination of running, separated by coffee breaks, some walking, plenty of sulking prompted by sudden dystonia, more walking, flexibility exercises, energy snacks, more jogging, unwelcome “off times”, more waiting for drugs to work by the park pavement all this while us chatting about school, projects, buddies, food, non-stop as we ventured on. As the weeks passed, we noted small wins. Her movements become smoother, muscles responded without KT tape, tremors temporarily subsided, and a mile became two, ten, fifteen..we hit the steep learning curve on running shoes, energy gels, pee cones, portapotties, water retention, timing my pills, and yet come race day, she stood in bitter cold of the November morning, on the starting line, wearing a race bib, tights, an insulated disposable skirt up-cycled by my guide from amazon packaging material, on the mighty Verrazano bridge, alive with excitement and yes, tremors, its a package deal lest I forget. Her participation in the NYC marathon, with an Achilles guide and finishing in 9 hours and 16 minutes, dead last, became a testament to her resilience and determination. The Brian Grant Foundation currently has that story on its community page under the title “We are the elites.” I unlearnt that lesson, and for the life of me, it will be etched in my brain – don’t give up, we have the neuroplasticity of accomplishing things we least expect and trying hard is the first step towards it.
Contact Info:
- Website: https://moversandshakers.info/
- Linkedin: https://www.linkedin.com/in/rian-julka-040497283/
- Other: https://rianjulka.com/