An interview with Amber Hesford on Advocacy through Social Media, August 3, 2023 by George Ackerman, Ph.D, J.D.
Amber Hesford was only 35 years-old when she was diagnosed with Young Onset Parkinson’s in 2018. Her sons were seven and nine. To help her cope with her diagnosis and find community, Amber’s dad suggested she share about her journey on the social media platform TikTok. In the past four years, her audience has grown to nearly 100K people from all over the world.
Please tell me a little about your background and what got you involved with awareness.
I’m a single mom of two teenage boys. I work a full-time job as a manager at a financial institution. I was diagnosed with Young Onset Parkinson’s in 2018 and just like many others I took to TikTok during the pandemic and began sharing my journey with Parkinson’s.
Can you tell me more about your advocacy?
Initially, I began sharing my story on TikTok basically for myself… to help me work through coping with the diagnosis. Now several years later I have a following of 97,000 + on TikTok and I’ve begun to share my story on Facebook, Instagram, and Clapper as well. Through this, I have made amazing connections and have worked with foundations such as the Brian Grant foundation, I’m an ambassador for the Davis Phinney foundation and an ambassador for Medtronics (which is one of the providers for the equipment for deep brain stimulation)
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
I’m passionate about Parkinson’s advocacy as this is something that I live with daily. I of course hope for a cure, not only for myself, but for all the amazing people that I’ve met along my journey.
What effect can your advocacy have on an individual with Parkinson’s awareness?
I’d like to think my advocacy educates people, brings awareness, brings hope and I try to do it in the most lighthearted way I can think of considering how serious the topic is.
What events do you participate in?
I participated in the hood to coast relay with the Brian Grant foundation, I’ve been on several podcasts -Such as the two Mike’s podcast and on time: A Parkinson’s podcast with the Brian Grant foundation, I participate in monthly “living with Parkinson’s” webcasts with the Davis Phinney foundation, I’m an ambassador for the Davis Phinney foundation as well and as an ambassador for Medtronics where I take phone calls and talk with people who are considering deep brain stimulation and now I’ve attended the 6th World Parkinson’s Congress in Barcelona Spain.
What type of goals do individuals with Parkinson’s have when working with you?
I started experiencing symptoms of young-onset Parkinson’s in my early thirties before being diagnosed at age 35. Parkinson’s disease (PD) is a progressive, neurodegenerative condition, commonly recognized as a movement disorder that impacts balance and coordination, causing slowness of movement, muscle stiffness, and tremors.
What events do you participate in?
I participated in the Portland to Coast Relay, an annual event in which 12-member teams walk 128 miles from Portland, Oregon to the Pacific Ocean. For the event’s 40th anniversary, a team of people with Parkinson’s and their loved ones came together to participate in the relay to raise awareness of the disease and the diversity in the Parkinson’s community.
Organized by Brian Grant, a former NBA player and founder of the Brian Grant Foundation, the team included women, people of color, single parents and six walkers, including Amber, with young onset PD.
How can someone get in touch? What is your website?
Someone can reach out via the email link in any of my social media platforms @NotTheFakeAmber
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
People think they have an impression of a person or condition, but we can never really know the full extent. It’s important to fact check the information because there is so much to learn. I’m still learning daily.