An interview with Tracy Donaldson on Advocacy & How not to feel useless on October 10, 2023 by George Ackerman, Ph.D, J.D.
I live in Ohio, am married to a wonderful man and between us we have 5 grown children, 8 grandchildren and 2 beautiful chocolate labs. Family is everything to us and when we learned that my younger brother had YOPD, we were devastated, scared, and wanted to do anything we could to help.
Please tell me a little about your background.
My younger brother, Larry lives in Canada and was diagnosed with YOPD when he was 45. As you can imagine, being so far away is tough. I know I can’t be there with him and his family to pitch in and help, and at first it made me feel useless. In general, I’m a person who always wants to help people. So, when I learned about Larry’s diagnosis, I had this need to do whatever little things I can to help bring awareness and funds to fight Parkinson’s.
Can you tell me more about your advocacy?
So, what does it look like to raise awareness when you have no experience in this arena and are just now learning about the disease you are advocating for? I did a lot of research on YOPD, I listened to my brother’s podcast (When Life Gives You Parkinson’s) which is really informative (and helps us understand what he is going through since we can’t be there). Larry started this podcast to raise awareness and to tell his story of YOPD from a patient’s perspective. He often shares his podcasts on social media, and I share them with my social audience as well, usually with a comment about why they should care about it. In 2019, my oldest son organized a 5K in Pickerington, OH that had over 100 participants and raised over $8000. I was fortunate to be able to help contribute and participate in that event with all our children and their spouses. My brother from Canada, our mom came in from Florida and people we hadn’t seen in years came out of the woodwork to support this effort either by participating, volunteering, or donating to this event. It was a really rewarding experience to be involved and as a mom I couldn’t have been prouder of my son and his wife for the time and hard work that they put into making this a successful event. Unfortunately, the pandemic hit the following year and we never got the walk restarted.
In the meantime, I have also joined PD Avengers, I’ve shared stories with other people who have relatives with Parkinson’s and do what I can to help support a friend who also has Parkinson’s.
In June, I was approached by the MJFF to meet with my US State Representative, Troy Balderson, to ask for his support for the National Plan to End Parkinson’s Act (H.R. 2365/S.1064). I was fortunate enough to get to share my story (attached) and recently learned that Representative Balderson did indeed sign on to support this bill.
Just these small things that I’ve done have made me feel like my brother and others know that I am doing my part to raise awareness and that I truly care. I don’t feel as useless as I did at first. Advocacy doesn’t mean you have to dedicate your life and all your free time to a cause. It means you keep it in the conversation and support it and the people affected by it however you can.
Beyond that, I don’t have a blog or podcast or anything special, I raise money when I can, I donate when I’m able and I spread the word on a regular basis.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion has always been to help people. I got involved in Parkinson’s awareness and a hope for a cure when my younger brother was diagnosed.
What type of goals do individuals with Parkinson’s have when seeing your advocacy?
I hope they have the goal of seeing me succeed in raising awareness and funds to fight this horrible disease.
What effect can your advocacy have on an individual with Parkinson’s?
I think (or like to think) that anyone who sees me advocating for Parkinson’s finds it comforting to know they aren’t alone and there are people out here fighting for them.
What would you like to see as a future goal for your advocacy?
Ideally, I have time to volunteer more locally and get more involved in the Parkinson’s community.
What events do you participate in?
Tremor Trot, 2019 – Pickerington, OH
How does your advocacy also assist caregivers?
Hopefully it also helps them realize they aren’t alone, and they have a friend in the community they can lean on.
How can someone get in touch? What is your website?
I don’t have a website. I’m on Facebook and my email is email@example.com
How can others also become advocates for awareness?
Start by joining PD Avengers and learn everything you can about the disease, visit the MJFF website, they have different opportunities and also research for opportunities in your local area. Share social media posts, talk to your friends and coworkers, Congressmen and State Representatives. Never let the subject die off in the sunset.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
You are not alone, and you didn’t do anything to deserve this. You are loved.