An interview with Ethan Henderson from the Michael J. Fox Foundation on July 10, 2023 by George Ackerman, Ph.D, J.D.
Biography
Ethan Henderson is a 53-year-old male diagnosed with young-onset Parkinson’s disease in 2016. His father was diagnosed at the age of 71 in 2001. Ethan works to educate the public and bring awareness of neurodegenerative diseases. In his role at the Michael J. Fox Foundation, he helps raise money to fund scientific research for Parkinson’s. To date, the Foundation has funded almost $2B in research.
For many years, Ethan taught at Georgetown University and in the graduate information schools of the University of Maryland, Wayne State, and the University of Illinois.
An avid runner, Ethan has run many marathons including Boston, New York, Chicago, and others.
Born and raised in the Midwest and originally trained as a musician, Ethan holds a BM in Music from St. Olaf College and graduate degrees in Rare Books and Manuscripts from the University of Illinois at Champaign-Urbana. He originally became involved in Team Fox in support of his late father who was diagnosed with Parkinson’s in 2001, and Ethan was diagnosed with PD in 2016 and continues his father’s commitment to “Never give up.” In his free time, Ethan enjoys spending time with his wife Gretchen and dog Ava, running and hiking and swimming, exploring backroads, xeriscape gardening, and staying connected to his Parkie family across the country. He loves his extraordinary ordinary life.
Please tell me a little about your background.
My father was diagnosed with PD in 2001 at the age of 71. After a few years of having people give my dad awkward glances, asking inappropriate questions, and just not helpful so I decided to become an advocate and try to educate people in his community. It was also helpful for us, as a family, to receive resources and guidance that helped in his journey. I received my own diagnosis in 2016.
Can you tell me more about the Michael J. Fox Foundation?
The Michael J. Fox Foundation (MJFF) exists for one reason: to accelerate the next generation of Parkinson’s disease (PD) treatments. In practice, that means identifying and funding projects most vital to patients; spearheading solutions around seemingly intractable field-wide challenges; coordinating and streamlining the efforts of multiple, often disparate, teams; and doing whatever it takes to drive faster knowledge turns for the benefit of every life touched by PD.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
It’s a deep passion for personal reasons. My father was diagnosed in 2001 and I received mine in 2016. I have met thousands of incredible people (with AND without Parkinson’s) because I carry this disease in my life journey. Obviously, my hope is for a cure, but I am also excited about the work that has been done to help treat our symptoms and what is just around the corner!
What type of goals do individuals with Parkinson’s have when working with you?
To educate and bring resources that will be of help to people with PD as well as their families. Each of us needs a team.
What effect can the Michael J. Fox Foundation have on an individual with Parkinson’s?
MJFF can provide a multitude of resources for PwP. Online materials to learn more about the disease, medications and alternative treatments, ways to build a care team, resources to learn about symptoms, information about studies/trials, and ways to get involved in our community. The online Buddy Network provides a confidential platform for people to discuss issues in a safe environment. In a nutshell, MJFF offers a community that will be with you from beginning to end (and beyond for your family). Each individual builds their own team, MJFF is there to help fill gaps or strengthen the groundwork already done.
What would you like to see as a future goal for your programs?
To continue the ground-breaking research to help all people with PD. But also, to try to create more opportunities for people in geographies that do not have access to the kind of care needed (MDS, PT/OT, etc). This can be in rural locations in the United States as well as in countries around the world. There is such a disparity, but we can only do so much.
What events do you participate in?
I participate in a wide variety of fundraising events for Team Fox. I also run, lift weights, swim, and participate in Rock Steady Boxing, PWR! Moves, as well as speech therapy.
How does the MJFF also assist the caregivers?
MJFF gives caregivers a venue to learn more about the disease while providing opportunities to become involved in advocacy, fundraising, and much more. Being a care partner can be challenging and we try to help break down barriers to learning what you can do. https://www.michaeljfox.org/news/care-partners is a great resource.
How can someone get in touch? What is your website?
www.michaeljfox.org We have so many options for people to learn more about the Foundation and how they can get involved. I am happy to discuss this with anyone.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Parkinson’s disease sucks. But what I have learned as a caregiver and as a person with Parkinson’s is that if it weren’t for the incredible people that I have met along this journey, it would be much more difficult for me to get up each day and be motivated to do good. I am thankful for what I have learned and grateful for the opportunity to teach others. I hope you reach out to me, or others, if you are wandering in your journey.