MESSAGE FROM THE EXECUTIVE DIRECTOR APRIL 2026

Yesterday I encountered a staggering number – $82 billion. That was the economic burden of Parkinson’s and atypical Parkinson’s in the U.S as of 2024, per a new report by The Lewin Group and co- sponsored by The Michael J. Fox Foundation (MJFF), American Parkinson’s Disease Foundation, The Parkinson’s Foundation, and Cure PSP.

To put that $82 billion number in perspective, MJFF has invested a genuinely impressive $2.2 billion into research over 26 years.

The math is clear – our community desperately needs a massive and rapid investment in the search for a cure so American families don’t go into debt trying to survive the fastest-growing neurodegenerative condition out there.

But let’s break down that number. Of the $82 billion, $23.8 billion is attributed to hospitalizations, outpatient care, medications, and other direct medical costs. Another $58.4 billion belongs to indirect costs like lost income, reduced productivity, and, critically, unpaid caregiving. That includes $5.7 billion in out-of-pocket expenses for supplies, therapies, and other quality-of-life services not covered by insurance.

These are untenable expenses for American families. And they’re rapidly accelerating. A 2019 projection estimated that the economic burden of Parkinson’s would hit $79 million…in 2037. We beat the buzzer by a full decade.

At PRO, we focus on improving quality of life and building community so nobody is isolated because of Parkinson’s. All of our programs and a lot of our advice costs nothing (our top three hacks for beating insomnia, for example. Jedi mind tricks). But a lot of living with Parkinson’s does cost money. I can’t Jedi mind trick the cost of Rytary, or in-home caregiving fees, or bathroom modifications to reduce fall risk.

The truth is, running Parkinson’s Resource Organization feels a lot like bracing for impact – we know the wave has not yet crested. We know our communities (familial, local, national, global) are collectively unprepared. We know demand for our services will increase significantly over the next decade, and we pray that our funding and capacity will keep pace.

I don’t want to kick off Parkinson’s Awareness Month on a grim note. This is a time we usually reserve to celebrate resilience. This month, we’ll celebrate our community on April 8th with Chocolate & Champagne, April 18th with PRO on the Move, and throughout the month at our support groups and social media channels.

Also happening – on April 13th I’ll join other California Parkinson’s leaders in Sacramento to advocate for a greater investment in scientific research funding. You can catch me on local news talking about the high incidence of Parkinson’s in specific communities across the country. And, I’ll be preparing for the World Parkinson’s Conference in May.

I’ll leave you with three quick and easy actions you can take this month to support PRO:

1. Attend an Event – we’d love to see you at our special events or support groups.
2. Interact on Social Media – follow us on Facebook, Instagram, and YouTube. And, like, share, comment, or otherwise engage with our content!
3. Make a Donation – you knew this ask was coming. As a small nonprofit, we depend on your support to keep our programs free and accessible to all.

Parkinson’s Awareness Month is an annual opportunity to refocus our objectives and recommit to our ultimate goal – the eradication of Parkinson’s. I’m all in on this fight, and I’m glad to have you by my side.

Now read on for PARKINSON'S AWARENESS MONTH: SHINING A LIGHT ON PARKINSON'S, AI SYSTEM DETECTS PARKINSON’S THROUGH VOICE, WALKING, AND HANDWRITING, ONE TYPE OF DRINKING WATER LINKED TO UP TO 62% HIGHER PARKINSON’S RISK, AT 47, SHE WAS DIAGNOSED WITH EARLY-ONSET PARKINSON'S DISEASE. NOW, SHE'S RAISING AWARENESS FOR WOMEN EVERYWHERE: 'MANY PEOPLE STILL THINK OF AS AN OLD MAN’S DISEASE', SYNGENTA TO STOP PRODUCING PARAQUAT AMID ONGOING PARKINSON'S CONCERNS, PRO OUT AND ABOUT: COMMUNITY ENGAGEMENT, AND MEET THE PRO TEAM. 

Eileen Lynch

Executive Director