PD Avengers' Larry Gifford with Dr Soania Mathur and Tim Hague Sr
In 2020, three years after being diagnosed with early-onset Parkinson’s, Larry Gifford teamed up with fellow people with Parkinson’s Dr Soania Mathur and Tim Hague Sr to found advocacy group PD Avengers. Now, six years after it began, this ‘global alliance to end Parkinson’s’ has reached an impressive 10,000 members and wide-ranging list of activities.
Over the years, PD Avengers has campaigned on banning pesticides and championed America’s National Plan to End Parkinson’s Act. Its annual World Parkinson’s Day campaign, Spark the Night, is a growing global event that sees buildings and landmarks lit up in blue to help raise awareness of the condition.
“What I’m most proud of isn’t one event – it’s that we’ve helped turn awareness into coordinated global action,” says Larry, 45, who lives in Vancouver, Canada.
Parkinson’s Life spoke to Larry to find out what the group’s membership milestone means, reflect on the group’s key achievements, and learn what PD Avengers is planning for this year’s World Parkinson’s Day and beyond.
Why did you set up PD Avengers and how has it evolved?
“Inspired by the book Ending Parkinson’s Disease by Drs. Ray Dorsey, Michael Okun, Bas Bloem, and Todd Sherer – and its framework of PACT: Prevent, Advocate, Care, Treat – a small group of advocates, most of whom live with Parkinson’s, came together in 2020 with one shared goal: accelerate progress towards ending the disease.
“Many of us first met at the World Parkinson Congress in Kyoto in 2019. There were 12 of us at that first gathering in 2020. As we began to grasp the scale of the challenge, someone joked that we sounded like cartoon superheroes trying to take down a global villain. Someone else replied, ‘The PD Avengers.’ The name stuck.
“What began as a conversation has grown into a global alliance grounded in three pillars: wellness, advocacy and research. We believe every person living with Parkinson’s deserves equitable access to therapies and resources.
“We believe our community has been too quiet for too long and must now be a louder, more persistent voice demanding change in how Parkinson’s is understood, funded and treated. And we believe Parkinson’s can ultimately be eliminated through prevention and research, including identifying and reducing environmental risk factors.”
PD Avengers has 10,000 members – congratulations! Why do you think you have struck a chord with so many around the world?
“I think we’ve struck a chord because PD Avengers is unapologetically patient-led and action-orientated. People are tired of “some day”. We are built around urgency – uniting voices to push for better research, better care and real prevention – while giving people practical ways to participate without needing permission.
“You don’t have to be an expert to help. You can join for free, attend a meeting, share a campaign, light up a landmark, or simply amplify a message. That combination of purpose and accessibility travels well across borders and cultures.
“As of February 2026, our database includes 10,646 PD Avengers worldwide. Of those, 96% have selected a country, with the largest numbers being in the United States (5,707), Canada (1,619), the UK (1,122), Germany (381), Australia (294), Austria (147), Italy (76), Ireland (73), New Zealand (63), and Spain (56).
“That global footprint reflects something bigger: people living with Parkinson’s – and those who care about them – are ready to move from awareness to action.”
Which PD Avengers achievement are you most proud of?
“We were created to add urgency – and that urgency has translated into action. Our members have led work on medication equity, investigating access to dopamine replacement therapies in developing nations.
“We have advanced global conversations around sleep and Parkinson’s, and contributed to research on the unmet needs of women living with Parkinson’s, including collaborations with UCLA and the International Parkinson and Movement Disorder Society, and Fox Insight surveys exploring women’s lived experiences.
“We’ve elevated awareness around environmental risk factors through initiatives like BanParaquat, advocating for stronger protections against toxic chemicals linked to Parkinson’s. We’ve collaborated with the World Health Organization, LSVT Global, Parkinson’s Africa, and partnered with the World Parkinson Coalition to roll out a Parkinson’s Ready programme in Vancouver, helping local organisations better understand and support people living with Parkinson’s.
“In 2021, we joined with the authors of Ending Parkinson’s Disease to rally more than 50,000 red letters to the White House calling for a US National Parkinson’s Plan.
“In 2022, we introduced ‘The Spark’, a global awareness symbol. Last year, Spark the Night had grown to 650 illuminated sites in 17 countries, spanning 31 US states, seven Canadian provinces, and 253 cities worldwide.
“In 2023 and 2024, we helped to champion the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act into US law. This law calls for an integrated national plan to prevent, diagnose, treat and cure Parkinson’s, ameliorate symptoms, and slow or stop progression. This plan will include not only Parkinson’s but will also encompass all other neurodegenerative Parkinsonisms, such as multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy and Parkinson’s-related dementia.
“This National Plan to End Parkinson’s will be developed with input from the Advisory Council on Parkinson’s research, care and services, which will include people living with Parkinson’s, caregivers, healthcare providers, researchers, advocacy organisations and representatives from federal agencies.”
In your 10,000-member announcement, you listed these plans. What progress has been made?
- Volunteer Coordinator
“We wanted to move from ‘people want to help’ to ‘people are deployed and supported’. I’m happy to say Lucie Phlippoteau has filled this role, and we now have more than 100 volunteers globally helping us Spark the Night.”
- Grow our board from three to six members
“We’ve added two new board members: R. Bernard Coley (care partner) and Esther Labib-Kiyarash (person with Parkinson’s). One additional board seat will be filled later this year.”
- Medical Advisors
“Dr Ray Dorsey and Dr Michael Okun – now authors of The Parkinson’s Plan, which is dedicated to the PD Avengers – serve as our Medical Advisors, helping bridge the patient community with scientific leadership.”
- Amplify local voices
“We continue to operationalise “Think Global, Act Local,” empowering communities to advocate for services and policy change where they live. We are also building state and regional “strike forces” to coordinate advocates in areas where legislation is being debated or voted on, so when policy windows open, we are organised, informed and ready to act.”
- Raise higher stakes
“Ten thousand voices give us leverage. We are pushing for stronger policy asks, larger research collaborations and deeper wellness programming.”
- Celebrate you
“We’re spotlighting member stories globally to reflect the diversity and power of this movement.”
“Registration is open, and [our focus for World Parkinson’s Day on] 11 April 2026 centres on Spark the Night. Our goals include 1,000 illuminated buildings, 1,000 Sparklets across 50 countries and participation in 300+ cities.
“Choosing a favourite building is nearly impossible – it’s like asking which spark matters most. From the Old Mutual Building in Nairobi, to the Empire State Building, Niagara Falls, the Fountain of the Naiads in Rome, and Cristo Rei in Portugal, we have illuminated some of the world’s most recognisable landmarks. Professional football and soccer stadiums have joined in as well.
“This year, we are teaming up with PMD Alliance for a month-long Parkinson’s awareness billboard in Times Square (42nd and 7th Avenue).
“[Introduced last year, for anyone to get involved in,] Sparklets are grassroots expressions of solidarity – a blue porch light, a decorated window, a workplace display – small visible acts that connect to a global campaign.
“What I love most about Spark the Night is that it’s public, visual solidarity. When your city lights up blue, Parkinson’s stops being invisible – and people are reminded they are not alone.”
What are PD Avengers’ other plans for World Parkinson’s Day 2026?
“We are again launching the Sit-to-Stand Challenge, inviting individuals and groups to log their sit-to-stands with a collective goal of 2 million in 2026.
“From 5–11 April, we will also host a daily two-hour live stream showcasing global projects, research and advocacy across the Parkinson’s community.”
Are you doing SparkArt in 2026?
“We’re taking a short pause this winter and spring, but SparkArt will return this summer. It is always inspiring to see how people reinterpret ‘The Spark’ through art – each piece reflecting awareness, hope and cultural perspective from around the world.”
How does your own Parkinson’s diagnosis influence your work?
“I was diagnosed with early-onset Parkinson’s in August 2017 at age 45, and had DBS (Deep Brain Stimulation surgery), in 2023. In many ways, PD Avengers feels like a natural extension of the podcast Rebecca and I hosted, When Life Gives You Parkinson’s. We were sharing our journey so others could better navigate theirs. This work is personal because I know what it feels like to need answers – and community. It also gives me purpose to wake up each day and advocate for the more than 12 million people worldwide who’ve heard the words, ‘You’ve got Parkinson’s.’”
What lifestyle steps help you manage Parkinson’s?
“I’m not a natural gym rat. But I have changed my diet and lost 13kg. I have cut out 95% of dairy, reduced alcohol significantly, limited beef to special occasions, eat a lot of vegetables (many raw), and eliminated soda, lunch meat, sandwiches and most snacking. I nap daily. DBS has allowed me to reduce my medication significantly.
Find out more about living well with Parkinson’s
“I build new neural pathways through teaching and performing – and I’ve recently started stand-up. Most importantly, I draw energy from family, friends and the Parkinson’s community.”
“Whether I’m serving as President of PD Avengers, hosting On Time for the Brian Grant Foundation, sitting on the Michael J. Fox Foundation Patient Council, or contributing to the Journal of Parkinson’s Disease, the through-line is the same: use every platform available to elevate patient voices and push urgency where decisions are made.
“I also serve on the steering committee of the Cures Collective, which brings together organisations focused on neurodegenerative diseases such as ALS, Frontotemporal Dementia, Parkinson’s, MS, Huntington’s and Alzheimer’s. Today, one in four people are expected to be diagnosed with a neurodegenerative disease in their lifetime. While researchers recognise the deep interconnections among these conditions, efforts to understand and combat them often remain fragmented – divided by silos in research, funding, care and policy.
“There is no unified strategy that bridges science, clinical care, public awareness and legislative action, and opportunities for collaboration among key stakeholders – researchers, clinicians, industry leaders, patients and policymakers – are still limited. With neurodegenerative diseases projected to become the second leading cause of death globally by 2040, the time for fragmented approaches is over.”
Your next goal is for PD Avengers to reach 100,000 members. How will you get there?
“We believe growth follows impact. The path to 100,000 is simple: invite someone, share your story, show up when you can. Spark the Night and Sparklets are designed to be low-barrier, high-visibility entry points – one person, one light, one city at a time. Slow growth is real growth.”
