MESSAGE FROM THE PRESIDENT -- DECEMBER 2023

After 34 years serving as Founder & President of Parkinson’s Resource Organization (PRO), I am moving forward in a new direction. Although not completely decided as of this writing, my intention is to continue my humanitarian efforts in the Parkinson’s world; doing some traveling, participating in speaking engagements, and perhaps even finishing my book and writing more. 

I am leaving Parkinson’s Resource Organization in exceptional condition with a stellar reputation of “working so no one is isolated because of Parkinson’s,” incredible programs in place, money in the bank, a new working Board of Directors, a capable Executive Director, new office space, a refreshed website, and enhanced measures to communicate with you easier and more effectively. 

When I started PRO 34 years ago, I knew virtually nothing about Parkinson’s. I knew that my mother had it, my then fiancé had it, but it was difficult to get information from doctors and scientists; after all, I was “just a caregiver.” 

I made a deal with God that if she would teach me everything I needed to know about “Quality of Life” for Mom and Alan, I would share it with the world. I created an organization, gave myself a title—President—and voilà... doctors, scientists, and other professionals “in-the-know” started giving me “the time of day.” It worked! With the mission of working so no one is isolated because of Parkinson’s, we continue to help thousands of people living with or caring for someone with Parkinson’s annually.

This journey has, at times, broken my heart. I lost my mother to a Parkinsonism in 1992 and my incredible husband Alan died of Parkinson’s in 2007. Then in 2008, the recession brought Parkinson’s Resource Organization to the brink of ruin; I held a garage sale, sold Alan’s clothing, and sold all our furniture to keep it afloat. With the help of friends, benevolent strangers, and you, we managed to stay afloat. 

Over these 34 years, I have fielded phone calls from people on the brink of bankruptcy, on the brink of suicide, battling homelessness, battling pain, battling loneliness, and also those who were financially successful, but had no idea where to turn for help. 

Throughout my tenure as President, I have watched billions of dollars diverted to as-yet unrealized research for a cure while direct human service endeavors like ours scrape by on pennies.

The Organization needs to stay alive, not because it is my legacy, but because the work it does is hugely needed in the Parkinson’s world.  

In 2021, I brought Eileen Lynch into the organization as the Director of Operations. Under my mentorship, I believe she can take PRO into the future. Eileen has over a decade of experience in nonprofit management and, more importantly, she is driven by humanism; her mission on earth is to build a kinder, more equitable society through community and service. 

These calls and words keep coming in. A constituent called with a question about an app we recommended in our Newsworthy Notes newsletter (incidentally, the longest-running monthly newsletter for the Parkinson’s community). Before she hung up, she said “by the way, you saved my life.”

Here’s another: “Yesterday on the Partner in Care Session you talked about the many phone calls and emails you receive from distraught People with Parkinson’s and Caregivers. The issue of funding care, of hospice, of government support or lack thereof was given with excellent focus. Your efforts are really, really, really (not a typo!) admirable!”

I am so proud to have built an organization that adds so much value to so many lives. I am proud to have built an organization that endured for 34 years and will endure until there is a cure for Parkinson’s. My final ask of you is to invest in PRO’s future today. 

This month, read on for A MESSAGE FROM BOARD VICE PRESIDENT. Then check out A VILLAGE GIFT GUIDE FOR THE HOLIDAYS; Q&A: MEET OUR NEW EXECUTIVE DIRECTOR ; 10 TIPS FOR CAREGIVERS DURING THE HOLIDAYS; PRO BY THE NUMBERS; A TIMELINE OF PROGRESS , and lastly; JO’S RECIPE FOR SUCCESS . 

Until next month, REMEMBER International Volunteer Day on December 5th, Hanukkah starts December 7th and ends December 15th, Christmas on December 25th, Kwanzaa on December 26th and New Year’s Eve is December 31st. The flower is the Holly and the birthstone is Topaz. 

ALWAYS remember to CELEBRATE YOU and PRAY FOR OUR TROOPS!