An interview with Jeremy Likness from You, Me and PD on October 10, 2023 by George Ackerman, Ph.D, J.D.
I am a professional computer programmer, aka developer, with over three decades of experience. I’ve worked with everything from startups to large, established companies with roles ranging from developer and architect to practice lead and director. I currently work for Microsoft as a product manager on our .NET platform. In 2020 I was diagnosed with Young Onset Parkinson’s Disease and immediately began advocating for awareness and research. I am on the Board of Directors for the non-profit Young Onset Parkinson’s Network and am a steering committee member helping design a YOPD conference in Seattle on October 14th and 15th.
Can you tell me more about your advocacy?
I’ve maintained a blog about my experience since the week after I was diagnosed at https://www.strengthwithparkinsons.com. I heavily advocate there, as well as at work by participating in our Employee Resource Group for employees who identify as disabled. I serve on the board of directors for Young Onset Parkinson’s Network, the steering committee for the APDA’s YOPD conference, and have fundraised over $20k for the Michael J Fox Foundation. At my wife’s suggestion we recorded a season of a podcast focused on how the caregiver in PD is impacted (https://youmeandpd.org). I’ve also advocated in front of Congress to drive co-sponsorship of the National Act to end Parkinson’s Disease.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is to learn how to slow the progression of the disease to buy time so awareness and research funding can lead to treatments that may slow or stop the destructive action of this disease. I also want to empower others who are diagnosed with the tools they need to feel confident and successful in spite of a life-changing diagnosis and to be aware of rights and the availability of accommodations and other aids in the workplace.
What type of goals do individuals with Parkinson’s have when working with you?
We all want to beat this terrible disease.
What effect can your advocacy have on an individual with Parkinson’s?
I can show how much life there is to live despite the diagnosis and connect people with resources to network and learn tips and life hacks and build a support group.
What would you like to see as a future goal for your advocacy?
I continue to focus on ways to bring knowledge to the mainstream so people understand what those of us with Parkinson’s go through and can better understand ways to make our work more accessible.
What events do you participate in?
Team Fox fundraising and the Give campaigns my employer runs with matches.
How does your advocacy also assist the caregivers?
Our focus is to create a community that includes caregivers to network with and support each other.
How can someone get in touch? What is your website?
How can others also become advocates for awareness?
Being involved in any way is helpful. Share resources and links. Retweet, post, bookmark, and like PD-related posts and articles.
What unexpected benefits came from my YOPD diagnosis?
I was introduced to a new group of courageous and caring individuals who represent our resilient Parkinson’s community.
In your opinion what is the key to effective advocacy?
Honesty, empathy, and passion all reflect in the actions we take. I think all three are crucial for successful advocacy.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Life is like going up the down escalator: if you stop moving, you fall behind. Parkinson’s makes us have to move a little faster, so we all get to go a bit farther.