Jennifer Crowder, Every Voice Matters: PD Advocacy

An interview with Jennifer Crowder, Every Voice Matters: PD Advocacy on June 25, 2024.



By her own definition, Jennifer is a tenacious fighter who wants to remind everyone living with Parkinson’s, has value and a story to tell. She is committed to showing the reality of living with a devastating disease, good or bad.


Please tell me a little about your background.

I am 48 years old, and have had symptoms

Since I was 20. Despite trying multiple Neurologists and treatment plans, wasn’t diagnosed until I turned 40. Since then, my life has been completely different from before the diagnosis.


Can you tell me more about your Advocacy?

The Parkinson’s Artisans Art Show is currently a one-person operation. I find a collection of artists- professionals and hobbyists, and everyone in between to display their artwork in a gallery setting. The purpose of the show is to empower PWP after diagnosis and give them a moment in the sun during dark times. I also aim to use it as a gateway to open discussions with the public about the full spectrum of the disease and the people living with it.


What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?

During the early days of COVID my friend and (entered an online art contest for people living with Parkinson’s. He was a professional photographer and took photos of my sculptures for the contest, and during that photo session, we talked about how an art show for PWP should be. After a quick internet search, we discovered there was no such event in our area. We decided to do it ourselves.


What type of goals do individuals with Parkinson’s have when working with you?

I think the artists are motivated to continue to do a creative activity that they love more consistently, despite the disease to put the best collection they could possibly show.  Several of them have small businesses around sales of their artwork and have had great success.


What type of training and how long are the programs?

The actual art show is annual during the month of April, but I’m working on it for the 9 months before. I make every effort to keep the show at no cost to attend or participate. I haven’t been trained but used to arrange employee events in my career.


What effect can it have on an individual with Parkinson’s?

The Parkinson’s Artisans Art Show’s primary goal is to make the PWP feel valuable. We commonly feel like a burden, a strain. To give something of ourselves and be recognized for the enormous effort of these pursuits is quite validating. To have a personal accomplishment that no one else can claim is quite empowering. The artists have formed a bond through the show and find commonalities easily. It’s remarkable.


What would you like to see as a future goal for your programs?

I want to keep the show focused on the everyday artist. To make this show a big event in my community showcasing artists like me, something my local area knows is something to be seen every April would be all I could hope for.


What events do you participate in?

Not many, to be honest. I do the Awareness walks, of course. I’m also an AVID Rock Steady boxer and will talk to anyone half listening about the benefits of the program. I’ve given speeches, written articles and done a podcast or two about resiliency, overcoming devastating news, authenticity, and gratitude.              


How does this also assist the caregivers?

I think the art show gives the opportunity for our CarePartners to see us as people, more than a patient. Around the time of the show, focus shifts away from medication schedules and doctor’s appointments. Finally, something we can do for ourselves, and the care partner gets to see their person shine. It’s a reminder of the person behind the symptoms.


How can someone get in touch?  What is your website? or


How can others also become advocates for awareness?

Really, anything helps. Learn about the disease and ask questions. Many of us will be happy to provide insight. This disease is so vast, most of the public knows of someone with the disease, a co-worker, father-in-law, friend’s uncle. Learn about their life inside and outside the disease and teach others what you learn. Once life with Parkinson’s is common knowledge, we’ll have the power to eradicate it.


How do you overcome the doom spiral.

The doom spiral is when the reality of this disease can’t be ignored any more, your symptoms are particularly bad, you didn’t have a great doctor’s visit, etc. it is easy, and common to think about your future. It’s no secret that it only gets worse from here. We think about finances, the burden on our care partners, not being understood, etc.  The way I climb out of the doom spiral is to make a gratitude list, from A-Z. Its quite helpful when trying to fall asleep, too.


In your opinion what is the key to effective advocacy? 

Keeping it casual and real is the only way for me. Speaking the truth from the heart is better received than being textbook perfect. People listen when you speak like them and hit topics that they care about. Advocacy doesn’t have to be on a grand scale.


How can we better fundraise to support a cure for Parkinson’s?

Activities are more interesting than walking in a circle with matching tee shirts.


What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?

Rock steady boxing 3 times a week keeps my symptoms at bay, I attribute my slow progression to my hard work in the gym. I’m also involved in support groups. I also communicate my needs more readily than I used to. I don’t care about looking strong or proving how much I can take. I’ve earned the right to listen to my body and get what I need without apologizing,


Why should people who don’t have Parkinson’s care about this?          

It’s a demonstration of determination and success in the face of adversity. Imagine how difficult it is to thread a needle. Paint grass. Carve an eggshell. Now put that with your image of Parkinson’s disease. We are determined to overcome our obstacles. Everyone has obstacles.


Have you had any family members or relatives affected by Parkinson’s disease?

Every person I know is affected by my disease. I’m the only person in my family currently diagnosed. I’m quite thankful for that.


If you had one song that would tell us more about you or represent your life which song would it be?

The one that immediately came to mind isn’t appropriate for this format, so I’ll tell you my second choice, “Piano man” by Billy Joel.


If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?

Don’t let the disease you have cover up the person you are.  You’re still you, and this disease and what it forces us to look like and do is not a personal failure. I know you’re fighting and trying as hard as you can.