LSVT Global Partner Spotlight! Carol Walton, The Parkinson Alliance

Carol J. Walton, President & CEO of The Parkinson Alliance

Tell us about what you do:

Well—right now I am assisting in the transition of The Parkinson’s Unity Walk to the Michael J. Fox Foundation.  We divested the Unity Walk in September of 2022, and this great event is now totally under the operation of the Fox Foundation.  The Parkinson Alliance was asked to take over the operation of the Unity Walk in 2001. At that time that Walk had raised just under one million dollars for research with 100% of every dollar going directly to Parkinson’s research.  As of September 2022, the Unity Walk had raised over $29 million, again, with 100% of every dollar going to Parkinson’s research.

The Unity Walk has truly become a global event.  However, to meet the growing scale of the Walk’s mission and reach more people impacted by Parkinson’s disease the Unity Walk Board of Directors decided to transition the event to the Michael J. Fox Foundation to leverage their network and resources.

The Parkinson Alliance will be closing their doors this month on April 30.  Our signature event was the Parkinson’s Unity Walk.  But our signature education event was our patient centered education started by our co-founder, Margaret Tuchman.  Currently we have 35 research reports covering motor and nonmotor symptoms on our website. These reports have over 26,000 survey responses. We are working with another Parkinson’s organization to feature these 35 reports in Margaret’s name as a way to continue the education and preserve her legacy.

How long have you been with the Parkinson’s community? How long have you collaborated with LSVT Global? 

I started working with the Parkinson’s community in San Francisco in the early 1990’s and worked with Bill Langston at The Parkinson’s Institute. My father was diagnosed with PD in the late 1980’s and it was a great place to become part of the Parkinson’s community.  I attended my first Public Policy Forum in Washington DC in 1996 and met Margaret and Marty Tuchman.  Margaret had Parkinson’s and they wanted to start a foundation to raise funds for research. In 1999 they moved me from San Francisco to Princeton, NJ to start The Parkinson Alliance.

We have collaborated with LSVT Global for over 20 years with both the Parkinson Alliance as well as the Unity Walk.  Dr. Fox and Dr. Ramig have been wonderful ambassadors for our patient centered research reports as well as being sponsors in the annual Parkinson’s Unity Walk.  I remember the first year I heard of LSVT and attended one of their workshops.  After the workshop I realized how LSVT could have helped my dad.  When he lost his ability to communicate with family and especially the grandchildren, he lost his quality of life. I’ve always said that had I known about LSVT my dad may have lived another 10 years at least.

What has been your favorite part of the job? What do you enjoy the most? 

Learning about all the research in Parkinson’s has been such a great education.  I’ve always tried to understand the research and then make sure I could convey to people with Parkinson’s in lay terms that everyone could understand.  When people understand research and the progress that is being made it truly gives them hope….and that is so important.

As with any disease, there is good information and misinformation. I try and keep up with the latest medications and therapies as we have so much in our community but if people are unaware, it doesn’t do much good.  I’ve also done extensive travel and tried to network and have various connections in all parts of the country.  Today there are still many people, when diagnosed, that need help getting to that first movement disorder specialist.  That first doctor can make such a difference in quality of life.

I’ve also spent a great deal of time understanding the Deep Brain Stimulation Therapy (DBS).  Margaret Tuchman had DBS prior to FDA approval in 2000 and we supported DBS research.  I was fortunate to have observed DBS surgeries both in the United States as well as the UK and to this day still get many calls from people wanting to better understand this therapy.

The first event that the Parkinson Alliance entered was the Los Angeles Marathon…that is where Team Parkinson was born and our wonderful volunteer co-chairs, John and Edna Ball.  We were an approved charity for over 20 years in Los Angeles and 10 years in the San Francisco Marathon.  We all know how important exercise is, and to be part of events like these and raise money for research was a win/win.  We helped educate our community and loved to watch people with Parkinson’s set new goals…and achieve them!

“Carol Walton is the spirit of Parkinson’s disease. When LSVT Global first met Carol, we felt her Parkinson’s Power. For twenty years we have had the joy of learning from Carol and watching her magic. LSVT Global has had the amazing experience of partnering with Carol in her great journey of building the Unity Walk into an event that inspires patients and families around the world. Carol’s never-ending impact on Parkinson’s disease comes from her heart. She is a major force in the Parkinson’s community and her impact will be felt forever. We are honored to call her a good friend and treasure our relationship with Carol. On a personal level, she is a wonderful Broadway partner with limitless energy for NYC adventures!!”  -Dr. Lorraine Ramig, Chief Scientific Officer & Co-Founder, LSVT Global

Tell us a little about yourself.

One of my bucket list items years ago was to be in NYC and read every book on the NY Times Best Sellers List….that is now seeing almost every show on Broadway!  Love NYC and the theater and all the great things this city has to offer.

I have 3 incredible grandnephews on the West Coast—6, 12 and 13!!!! Spending time with them is just the best…and always a challenging goal living on the East Coast! They love coming to NYC and seems like there is never enough time to do it all!!!

What is your favorite quote, food and/or past time?

Favorite Food:  Pasta, pulled pork and cake batter ice cream with chocolate chip cookie dough.

Favorite past time:  Attending Broadway Shows in NYC and working out!

Favorite quote:  What would you attempt to do if you knew you could not fail?

Sign up or donate to the Parkinson’s Unity Walk this April 22nd, 2023 here!

“It is difficult to be concise when summarizing the impact Carol has had on the Parkinson’s community. She is a force to be reckoned with! She is a master networker, effortlessly connecting people and resources around the globe to advance Parkinson’s research, fundraising, and quality of life causes. She always has a dazzling smile and positive attitude – and she is FUN! Carol’s tenure at the Parkinson Alliance and Unity Walk will be remembered with millions of dollars raised, multiple patient-centered causes advanced, and so many lives of those affected by Parkinson’s being just a little bit, or a lot, better. We love you Carol and can’t wait to see what you do next. Our gratitude is immense for your passionate service to the Parkinson’s community and faithful friendship to LSVT Global! Cheers to you!”  -Dr. Cynthia Fox, CEO & Co-Founder, LSVT Global