Team Fox members worldwide are turning their passions into successful fundraising events — from hosting pancake breakfasts to organizing golf tournaments and much, much more. In this ongoing series, The Michael J. Fox Foundation (MJFF) asks our Do-It-Yourself (DIY) community about their experiences fundraising and creating events with Team Fox.
Throughout the years, the entire Harmon family — Bob, his wife Cecily and his two daughters Emily and Kate — have all been involved in Parkinson’s disease (PD) research by creating their own events, running races and/or supporting other Team Fox events. In 2010, Bob, who lives with PD, hosted his first golf tournament for Team Fox. In 2017, Kate and her now-husband Matthew, hosted their first cocktail fundraiser, Shaken Not Stirred. Read more about the Harmon’s inspiration for joining Team Fox and the impact joining has had on them below.
MJFF: How did you get involved with Team Fox/MJFF?
Bob: When I was diagnosed, my neurologist suggested I go to the MJFF site and learn what I could about PD. After reading a lot on the website, I decided to organize a golf tournament to raise money for the Foundation through Team Fox.
Cecily: After his diagnosis, Bob and I organized a support group for PD patients and their care partners. One of the early presenters worked with Bob’s movement disorder specialist and told us about a study called Parkinson’s Progression Markers Initiative (PPMI) which needed patients as well as controls. I signed up as a control for the six-year study which was funded by MJFF.
MJFF: What has being a part of the Parkinson’s community been like for all of you?
Bob: Over my 17 years with PD, I have made many friends and lasting relationships. The Team Fox family means everything to us. We have made so many friends, learned so much about PD and found ways to help each other. Cecily and I no longer raise funds by hosting a golf tournament, but our daughters are now carrying the torch. Their involvement with Team Fox carries on our commitment to the Foundation and raising funds for valuable research to find a cure.
Cecily: The PD community is truly like a big family. Once you have a disease in common with someone, you progress to a deeper friendship quickly. We have met so many amazing people we never would have had a chance to meet if it hadn’t been for PD.
Emily: Being a part of the Team Fox family has been the biggest blessing of my dad's diagnosis. We have met some incredible people and families that we automatically have an understanding of what each other is living through.
Kate: I always say it’s the family I never wanted to join, but I’m so glad I did. I don’t wish Parkinson’s on anyone, but of all the things to be diagnosed with, Parkinson’s has the best community of people from all walks of life. There are folks I can call and rat out Mom and Dad and they call and check on them, and vice versa. They take phone calls at all hours of the day. They travel far and wide just to support you and your events.
MJFF: How has Team Fox and community fundraising impacted you/why Team Fox?
Bob: Once I decided to organize a golf tournament, our Lake Ashton, Florida community supported me whole-heartedly. They embraced our efforts to fund a cure for PD. I invited everyone to join me on my Parkinson’s journey and each year the contributions exceeded our expectations. Team Fox staff would come and help by working the event and their presence and speeches let our community know how much we were appreciated. Everyone felt they were personally involved in finding a cure. In 2020, our golf tournament was cancelled due to the pandemic. All our sponsors and participants were offered a refund and they all refused to take it. Our community truly embodied the Team Fox spirit.
Emily: Team Fox and the family I have gained from being involved has changed my life. It has helped us navigate the PD journey and find strength in times of weakness. Team Fox has pushed me outside of my comfort zone on many occasions from advocating to Congress for money for PD research to completing a half marathon with little to no training.
Kate: I think the best-selling point other than “SUPPORT BOB” is that when you donate through Team Fox, 100 percent of the dollars raised go toward funding research. You can’t beat that. I work in nonprofits and it’s nearly unheard of.
MJFF: Bob has played such an active role in supporting other Team Fox fundraisers and helping them get off the ground. What does that mean to you?
Cecily: Once Bob joined the Team Fox family, he wanted to help anyone in their fundraising goals. He would drive just about anywhere in the state to help organize a golf tournament. He also took many phone calls from people needing advice on fundraising details. The more people we met, the more opportunities arose for him to get involved in other events. This became his main purpose in life. We all joined in to echo his enthusiasm and it became a way of life for us.
Emily: Him being active in supporting others has given him ownership over his journey and a purpose in helping others. One Thanksgiving we were sitting down to eat dinner and he received a call from someone out of the country that had just been diagnosed. He sat on the phone with them for hours. We all listened in awe of him and his selflessness.
MJFF: What were your first thoughts and feelings when Bob received his diagnosis? How has your outlook on PD evolved since then?
Cecily: Neither one of us knew anything about PD when Bob was diagnosed in 2006. We were both scared and in shock. We immediately got a second opinion to make sure that it was a real diagnosis. Bob proceeded to learn all he could about the disease. I think he went from the shock of the diagnosis to full-on acceptance very quickly. I was still working, so his optimism was a great comfort to me.
When he retired soon after his PD diagnosis, he mentioned to me that he really wanted to give back. PD gave him a perfect platform to help others and create more awareness about the disease. He was very active in deciding with his doctor about specific drugs and treatments. He is now 17 years in and was really doing well with minor symptoms until a year ago. He was then diagnosed with Parkinsons disease dementia. His PD symptoms are tolerably under control, but the dementia is progressing. Life is very different as I can’t leave him alone. This is the part of PD I wasn’t prepared for. Now I am a member of dementia support groups and regularly attend webinars and seminars about dementia and coping with the disease. We will still get through this together.
Emily: We were juniors in college when my dad was diagnosed. I immediately threw myself into research since I was a science major. While I was afraid of what the future held, I knew that we could handle anything together. His diagnosis really brought our family closer in our common goal, to find a cure for PD. We have always viewed his diagnosis as a blessing to our family. Now that he has progressed a lot recently after over a decade of slow progression, we find grace and joy in the good days and support each other as much as possible on the hard days.
Kate: I was the last to know, and honestly, it was the first time I thought of my parents as not invincible. But over time, I got to a point where I didn’t even think about “how bad” things could be. It was just what are we doing for and about Parkinson’s. For the longest time, dad was the shining example of what truly LIVING with PD could be.
MJFF: What was one piece of advice you were told at the beginning of your caregiving journey? What do you wish someone had told you?
Cecily: I was told to be sure to take care of myself. This is very important because how can I help my husband if I am tired or sick? It’s hard to find the time when you are caregiving 24/7. I finally (with my daughters’ urging) hired a caregiver to be with Bob three days a week. I can go exercise, go to lunch with friends, go to a movie or just go to a park and read a book! These days recharge my batteries for the care Bob needs.
Kate: It’s definitely not for the weak. I realized recently that I see caregiving as a long form of grief. And that grief is like glitter. There are moments of sadness, confusion, anger and stress. That’s the stuff that it’s a pain to clean up out of the carpets and you find in your hair or on your clothes even when you’re celebrating the good. It’s hard to brush away even when it shimmers. And then there are moments of joy and normal life where you want to take those moments and throw it around like you’ve got confetti in your pocket. There are belly laughs, there are old and new memories, there’s growth and support and love. It’s a mess, but it’s beautiful and it’s life.
MJFF: PD research is advancing, what does this mean for you all when you think about PD?
Bob: I took part in many drug trials for the advancement of treatments for PD. Several became drugs that are on the market now. I am so happy I could do my part for research. The next trial could become a cure.
Emily: Finding a cure is closer than we think! I am so hopeful for the day when we can say that we got there! While we are waiting, it is amazing to see the new therapies and medications that come out. All of it is because of trial participants and I am so grateful for those people.
Kate: I got married this April, and having dad there to walk me down the aisle was something we knew would be really important for us and for my family. I also incorporated Emily into our first dance because you can never know what life has in store for us. When planning the wedding and continuing my Parkinson’s work, I really hit this poignant moment where I realized one day girls like me, girls like Emily and all our other Team Fox sisters, will live in a world where PD won’t take their dads. They won’t risk not having these moments. That’s what we’ve been working for. So no little girls and boys, wives, husbands, brothers or sisters will lose anyone because of this disease. And to know how much closer we get to this world every single day thanks to MJFF is amazing.