An interview with Sarah Nilsson from Fox Trot 5k: Shine a RAY of light on Parkinson’s on February 16, 2024 by George Ackerman, Ph.D, J.D.
Biography
My name is Sarah Nilsson my dad Ray has had PD for over 20 years. I’ve competed in and been involved with pageants since I was 17 years old and I am currently Miss Aura USA 2023. Being involved in pageantry you get to have a social impact initiative and/or platform. As a public figure you have a greater sphere of influence and I want to be a key factor in finding the cure to Parkinson’s Disease. I’ve seen what my dad has had to go through and I want to help others whether they have PD are a caregiver or have known someone with PD. Everyone can get involved, run for a cure and help end PD! My platform is Shine a RAY of light on Parkinson’s honoring my dad.
Can you tell me more about your organization?
The Fox Trot 5K was started because I saw what good the research did to help my dad have a better quality of life. Our 4th annual race will be held Saturday, October 5th 2024 at Wheeler Historic Farm Murray Utah. 100% of the proceeds go to the Michael J. Fox Foundation. Their funding goes directly towards improved medicines, therapies and surgeries like the Deep brain stimulation surgery DBS my dad had.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion for Parkinson’s awareness ignited when I witnessed the impact of the disease on my loved ones. Seeing their challenges motivated me to advocate for awareness and contribute to the hope for a cure. Joining support groups and engaging with the Parkinson’s community further fueled my commitment to making a difference.
What type of goals do individuals with Parkinson’s have when working with you?
For one of our runners Jerrie Hofeling her goal was to finish the race. Her husband Gene was diagnosed in 2019. He has been boxing with one of our sponsors another non-profit called ‘Rock Steady Wasatch Front’ since February. Jerrie is a wonderful little lady who finished the race with her walker! She had her physical and occupational therapy crew with her. She was once very athletic and a competitor as well as a fierce fighter.
What effect can it have on an individual with Parkinson’s?
Regular exercise, including activities like running our race, can have positive effects on individuals with Parkinson’s disease. Running, specifically, may help improve various aspects:
- **Motor Function:** Running can enhance motor function and coordination, addressing some of the movement difficulties associated with Parkinson’s.
- **Balance and Stability:** Engaging in running can contribute to improved balance and stability, which are often challenges for individuals with Parkinson’s.
- **Mood and Mental Well-being:** Physical activity, including running, has been linked to the release of endorphins, promoting a better mood and potentially helping with depression or anxiety often associated with Parkinson’s.
- **Cardiovascular Health:** Running is a cardiovascular exercise that can benefit heart health, promoting overall well-being.
It’s essential, however, for individuals with Parkinson’s to consult with their healthcare professionals before starting any exercise program. Tailoring the exercise routine to individual capabilities and needs is crucial to ensure safety and effectiveness.
What would you like to see as a future goal for your Race?
Raise $20,000 at our 4th annual race through sponsors and runners with the same goal in mind.
What events do you participate in?
Fox Trot 5k Utah
How does this also assist the caregivers?
The main goal is finding a cure to Parkinson’s. This is giving hope to caregivers that their loved one can have a better quality of life and know that those diagnosed in the future may not have to go through this terrible disease.
How can someone get in touch? What is your website?
Fox Trot 5K Utah Director Sarah Nilsson
https://ultrasignup.com/register.aspx?did=110023
Facebook: Sarah Marie Nilsson
Instagram: @sarmarnilsson
Tik Tok: @sarmarnilsson
How can others also become advocates for awareness?
It’s as simple as sharing a post on social media, being a part of our charity or donating to the cause. We chose the Michael J. Fox Foundation MJFF because of the amazing research they have done to help those living with PD today.
In your opinion what is the key to effective advocacy?
Choosing a cause that is personal to you and having a strong committee, a plan and motivation. But when motivation dies down, which it does, remember your WHY.
MY WHY
For as long as I can remember my dad has been my hero and best friend. People all the time not only say the apple didn’t fall from the tree but the apple never left the tree! My dad Ray has had Parkinson’s Disease (PD) for over 20 years and I know first hand what it entails. For my birthday one year I raised money on Facebook for the Michael J. Fox Foundation (MJFF) and each amount I had to do a dare. For example $200 and I would eat an onion like an apple. $400 and my dad would do my makeup. $500 and we got to do his makeup! My why, my life goal and aspiration is to be a key factor in finding the cure to PD through raising money for the MJFF. All the money raised goes to research for improved therapies, medications and surgeries like the brain surgery he had. It changed his life for the better. So, thank you for lacing up for a cure. None of this would be possible without our runners, supporters and sponsors THANK YOU.
How can we better fundraise to support a cure for Parkinson’s?
Getting involved with local events raising money for PD.
Why should people who don’t have Parkinson’s care about this?
People who don’t have Parkinson’s should care about the disease for several reasons:
- **Empathy and Understanding:** Developing awareness fosters empathy and understanding. Knowing about Parkinson’s helps individuals relate to those affected and creates a supportive community.
- **Research and Innovation:** Increased awareness can lead to more funding and support for Parkinson’s research. Progress in finding a cure or better treatments benefits not only those with Parkinson’s but society as a whole.
- **Public Health Impact:** Parkinson’s is a prevalent neurodegenerative disorder, and understanding its impact on public health can guide policies and resources to address the growing needs of affected individuals and their families.
- **Community Involvement:** A collective effort is often required to address complex health issues. By caring about Parkinson’s, individuals contribute to a more compassionate and informed society.
- **Prevention and Lifestyle Choices:** Some research suggests that lifestyle factors may influence the risk of developing Parkinson’s. Awareness can encourage healthier living practices that may contribute to reducing the overall burden of the disease.
In essence, caring about Parkinson’s is part of fostering a caring and informed society, promoting scientific progress, and addressing the needs of diverse communities.
If you had one song that would tell us more about you or represent your life, which song would it be?
For our cause and not necessarily myself I would choose the song HALL OF FAME by William the lyrics that help motivate and inspire others would be: Cause you burn bright with the brightest flame And the worlds going to know your name And you’ll be on the walls of the hall of fame. You can go the distance you can run the mile. You can walk straight through hell with a smile. You can be a hero you can get the gold. Breaking all the records they thought would never be broke. Yeah do it for your people do it for your pride How’re you ever gonna know if you never try?
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Together we can illuminate a path of hope, resilience, and unwavering support. In each step, may we find strength, grace, and the beauty of solidarity, as we run towards a brighter tomorrow.