Biography
An interview with Satvinder Dubb, Fueled By Dopa: Turning Parkinson’s Into Purpose.
Biography
I’m Sat Dubb, a husband, dad of two young girls and a Young Onset Parkinson’s advocate from Bristol in the UK. I was diagnosed at 37 after years of symptoms and different diagnoses, and since then faith, family and hope have become even more central to how I live my life.
Can you tell me more about your Advocacy?
My advocacy is built around lived experience through Fueled By Dopa – sharing the honest reality of Young Onset Parkinson’s while pushing for better awareness, representation, research and inclusion. I also work with Parkinson’s organizations, take part in research and steering groups, speak at events and try to make sure voices from younger and ethnically diverse communities are in the room.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
After diagnosis I realized very quickly how little many people understand Young Onset Parkinson’s, and how underrepresented communities like mine can be in research and awareness. I decided that if Parkinson’s was going to be part of my life, I wanted to use my voice to make something positive from it and help move us closer to better treatments and, one day, a cure.
What type of goals do individuals with Parkinson’s have when seeing your Advocacy?
I don’t want anyone looking at my advocacy and thinking I’ve got Parkinson’s figured out, because I definitely haven’t. I want people to feel less alone, see that life can still have purpose, and maybe feel able to move more, ask questions, join research, speak up or simply be more open about what they’re going through.
What type of training and how long are the programs?
Fueled By Dopa isn’t a formal training programme, so there isn’t a fixed course or length. The physical side of how I manage Parkinson’s includes regular strength training, Parkinson’s boxing, neuro-physio and walking or running when my body allows, while my awareness and research work can range from one-off events to studies, campaigns and steering groups lasting months or years.
What effect can your Advocacy have on an individual with Parkinson’s?
Sometimes the biggest impact is simply helping someone think, ‘someone gets it.’ If sharing the good days and the rough ones gives another person the confidence to seek support, exercise, join research or talk more openly about Parkinson’s, then that matters to me.
What would you like to see as a future goal for your Advocacy?
I’d love Fueled By Dopa to grow into a genuine community platform that is bigger than just me. I want it to amplify voices that are still missing from Parkinson’s spaces, improve diversity in research and brain donation, and keep bringing together awareness, exercise, community and hope in a way that feels real.
What events do you participate in?
I take part in Parkinson’s UK events and campaigns, research studies and trials, fundraising events, charity walks, awareness days, speaking opportunities and Young Onset Parkinson’s community events. I’ve also been involved in family-led fundraising through RunaDubbDubb and increasingly use events as a chance to connect people with research, support and each other.
How does this also assist the caregivers?
Parkinson’s never affects just one person – partners, children and families live with the impact too. Honest advocacy can help caregivers feel seen, understand symptoms they may not have recognised, find support and realise that their wellbeing matters as well.
How can someone get in touch? What is your website?
The best place is fueledbydopa.com or by email at hello@fueledbydopa.com. The website is still under development and not fully finessed yet, but you can also find me across social media as @fueledbydopa.
How can others also become advocates for awareness?
You don’t need a big following or a title to advocate. Share your truth, challenge misconceptions, volunteer, support research and fundraising, and most importantly make space for people whose experiences are different from your own.
If you could add any questions to this interview that you may want others to learn about, what would the question(s) be? And what is your response?
I’d add: ‘What does Parkinson’s look like in someone diagnosed in their 30s?’ My answer would be that Parkinson’s has no single look – younger people can be living with tremor, rigidity, dystonia, fatigue, sleep problems, anxiety and many symptoms people never see, while still raising families, working and trying to live a full life.
Who is still missing from Parkinson’s research and awareness?
Too often it is people from ethnically diverse communities, younger people and others who haven’t traditionally been represented in research or public campaigns. If research is meant to help everyone, the people taking part in it need to look far more like the communities Parkinson’s actually affects.
In your opinion, what is the key to effective advocacy?
Listen before you speak, stay honest and don’t pretend one person’s experience represents everybody. The strongest advocacy, for me, combines lived experience with evidence and then turns that conversation into something useful – awareness, access, representation or action.
How can we better fundraise to support a cure for Parkinson’s?
Make fundraising personal, transparent and connected to a real story so people understand what their money is helping to change. I’ve seen through community and family events that you don’t always need something huge – consistency, trust and bringing people together can raise serious money and awareness.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
Exercise is a huge part of my life – strength training, boxing, neuro-physio and walking or running when I’m able – alongside my prescribed Parkinson’s medication. I also use things like float therapy for relaxation and recovery, focus on hydration and nutrition, and lean heavily on faith, family and routine; none of those replace medical care, but together they help me manage day to day.
Why should people who don’t have Parkinson’s care about this?
Because Parkinson’s doesn’t just affect the person diagnosed – it reaches families, workplaces and whole communities, and it can affect people far younger than many realise. The awareness, research and treatments we push forward today could change life for someone you love tomorrow.
Have you had any family members or relatives affected by Parkinson’s disease?
Yes. One of my dad’s brothers, my uncle, developed Parkinson’s, and more recently dementia has started to take its toll on him too. Outside of that, Parkinson’s wasn’t something I grew up seeing closely in the family, so my own diagnosis still came as a huge shock.
If you had one song that would tell us more about you or represent your life, which song would it be?
I’d probably choose ‘The Nights’ by Avicii. Life changed massively after diagnosis, but it has made me even more determined to make memories with my girls, live with purpose and leave something positive behind.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Since diagnosis, one mindset has stayed with me: every day’s a gift, not a given. Parkinson’s has changed how I move, how I sleep and some days how much I can do – but it hasn’t taken my purpose. Keep showing up in whatever way you can; even the bad days count.
TogetherForSharon® In memory of my mother, Sharon to voice awareness & hope for a Parkinson’s Disease cure. Sharon’s Son, George
Support https://www.togetherforsharon.com/shop/
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