MESSAGE FROM THE EXECUTIVE DIRECTOR--JUNE 2024

Back in February we shared a brief article about a piece of legislation called the National Plan to End Parkinson’s Act. This bill would increase federal research funding to prevent and cure Parkinson’s, develop standards and measures to track Parkinson’s, increase public awareness, and address health disparities in diagnosis and treatment. Just a few days ago the bill passed the Senate; it’s now headed to the President’s desk for expected signature. 

For the Parkinson’s community, this is a major acknowledgment of what we’ve been saying for years... that Parkinson’s is an under-recognized, underfunded crisis. It puts Parkinson’s, the fastest growing neurodegenerative condition in the world, on par with Alzheimer’s in terms of federal recognition and urgency. 

On a personal level, this is a sobering full-circle moment for me. The full name of the legislation is the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act. Representative Wexton announced her Parkinson’s diagnosis in 2022, which was later amended to Progressive Supra-Nuclear Palsy (PSP). She has been a major factor in the bill’s success—and ten years ago I worked as a field organizer on her first successful campaign for public office.  

It’s a strange turn of events. That campaign feels a lifetime ago and yesterday at the same time. I was unpolished, idealistic (some might say naive), and consumed with many passions. Parkinson’s was on my radar merely as a distant concern; something which affected the loved ones of ones I loved. For Representative Wexton as well, Parkinson’s may have been on her radar, but it certainly never made it onto her campaign platform. 

Yet here we are. A decade later I eat, sleep, drink, and breathe Parkinson’s, and one of the more significant federal advancements in Parkinson’s arrived through the work and lived experience of a woman for whom I bruised my knuckles knocking on doors to win votes. Life is strange that way. 

But let’s get down to business… we are using the summer months to assess and refine our Support Group schedule, with plans to launch an updated event schedule in September. Weigh in by completing our Summer Support Group Survey. This is a short, anonymous survey assessing the times, frequency, and efficacy of our lineup. What do you like? What do you not like? What or who would you like to see more of? Complete the survey at ParkinsonsResource.org/SupportGroupSurvey2024. 

Speaking of Summer… read on for tips to avoid DEHYDRATION IN PARKINSON’S: SYMPTOMS, RISKS & TIPS; along with PARKINSON’S PATIENT MOVES FREELY AFTER IMPLANT OF LAB GROWN CELLS; OLYMPIC TORCH CARRIED IN HONOR OF PARKINSON’S; UNDERSTANDING HOSPICE FOR PARKINSON’S; and FAMILIES PRESS FOR ESSENTIAL CAREGIVER RIGHTS. 

If you’ve been loving Bill Remery’s series on Estate Planning, it will be back next month.

Until next month, remember Flag Day on June 14th, Father’s Day on June 16th, Juneteenth on June 19th, and the Summer Solstice on June 20th. The flower is the Rose and the birthstone is the Pearl and Moonstone. 

Always remember to Celebrate You and Lead With Love.