An interview with Megan Schneider, Advocacy Outreach Coordinator working with the Michael J. Fox Foundation for Parkinson’s Research on June 5, 2023 by George Ackerman, Ph.D, J.D.
Please tell me a little about your background and what got you involved with awareness.
I graduated from UNC Chapel Hill recently. Growing up, my great uncle had PD. I did not know a lot about it then, but I did see how it affected his life. He was a professor and traveled around the world to teach. Towards the end of his life the disease stopped him from doing what he loved. I saw the frequent progression. I ended up working with the MJF Foundation by starting through the communications division. I have always been interested in helping people and trying to make people’s lives better. The MJF Foundation was a great way to help individuals do just that.
Can you tell me more about the Michael J. Fox Foundation?
I work specifically for the National Plan to End Parkinson’s Act (S.1064/H.R.2365). See https://www.michaeljfox.org/news/congress-reintroduces-national-plan-end-parkinsons-act
I work on helping it get passed through Congress. I engage advocates to get in touch with their local representatives and to share their stories. Our goal is to help cure and prevent Parkinson’s through this legislature.
As of today, we have 79 co-sponsors through Congress. Every week we continue to get more individuals involved. We have held over 120 meetings where individuals can speak to their representatives and explain the importance of this Bill. It has a lot of support when it takes to the floor of the House and Senate. We are still in the initial process. Our goal is to get the Bill to pass through the 118th Congress.
The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson’s disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson’s today (MJFF, 2023).
More on the National Plan to End Parkinson’s
A National Plan to End Parkinson’s has the potential to:
Dramatically increase federal research funding;
Develop more effective pathways for treatments and cures;
Improve early diagnosis;
Spark new and improved models for patient care;
Create standards and measures to prevent Parkinson’s disease;
Address health disparities in diagnosis, treatment and clinical trial participation; and
Enhance public awareness of the disease
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
I have always enjoyed helping people. I want to make the world a better place. Reingold is a communications firm working with the MJF foundation on legislation. I was lucky to have an opportunity to work with Reingold and can get others involved who have real life positive changes in the world. These things will change individuals’ lives forever.
What type of goals do individuals with Parkinson’s have when working with you?
People want to share their stories. Now they can do it through their legislators. Others involved are in the medical community. Everyone we speak with has a direct impact on PD and they realize how important it is to gain support for everyone since it benefits individual families.
What type of training and how long are the Michael J. Fox Foundation programs?
I have a background in public relations and political science. When we were onboarded, we received a lot of important information to prepare us but going into the field and working with individuals is the best preparation.
The Michael J. Fox Foundation’s research strategy — projects and activities we fund and prioritize for scientific attention and problem-solving — evolves rapidly in concert with advances made in Parkinson’s disease (PD) research. The past two decades have brought substantial growth in understanding PD, in particular the role of genetics and the disease mechanisms that are influenced by genetic changes. This has led to the development and testing of several experimental therapies that have the potential to slow or stop progression — patients’ greatest unmet need (MJFF, 2023).
What effect will the End Parkinson’s Disease Act have on an individual with Parkinson’s?
The National Plan is getting experts together to plan the best way to move forward to combat and end Parkinson’s disease. It can help allocate funding, bring people together and in the end manage and cure the disease.
The Michael J. Fox Foundation’s (MJFF) agenda is focused on building improved knowledge about the lived experience of Parkinson’s disease, finding an objective test for Parkinson’s, engaging patients in research and supporting the development of new treatments and a cure (MJFF, 2023).
What would you like to see as a future goal for the Michael J. Fox Foundation?
I would love to see the National Plan to pass and the Foundation to continue to make groundbreaking research to benefit individuals with Parkinson’s. I am excited to see Federal and state advocacy that the MJFF continues to work on. I enjoy how the community is really getting involved as well. They now have a say in the process.
While we have made progress, much remains to be discovered. Our relentless pursuit of a cure requires a dedicated and significant supply of human and financial capital. MJFF has funded over $1 billion in research programs to date, setting priorities in our portfolio that build on the field’s unprecedented momentum (MJFF, 2023).
What events do you participate in?
Main offices for the MJFF are in NY and the legislative portion in DC. I will be moving there in the future and likely get involved once they do hold events.
A renaissance is taking place in Parkinson’s research and therapeutic development. The Michael J. Fox Foundation (MJFF) is leading the charge toward a world without Parkinson’s disease (PD). Since our Foundation’s inception, we have operated with one single-minded goal: putting ourselves out of business by finding the cure for Parkinson’s. Driven by this admittedly unusual approach, we have designed a milestone-driven, innovative, and high-risk model to identify and accelerate those ideas with the greatest potential to solve field-wide problems, accelerate the pace of research and make a tangible impact on patients’ unmet needs. Everything we do is in service of our mission to eradicate Parkinson’s altogether (MJFF, 2023).
How does this also assist the caregivers?
Caregivers, care services and families are all thought of within the National Plan to End Parkinson’s Act.
According to the MJFF website:
It also will alleviate financial and health burdens on American families and ensure those living with the disease have access to the care they need. About one million people are living with Parkinson’s in the United States and there are nearly 90,000 new cases diagnosed every year.
How can someone get in touch?
And more on the Plan at https://www.michaeljfox.org/news/congress-reintroduces-national-plan-end-parkinsons-act
Megan is a communications strategist working with the Michael J. Fox Foundation to encourage Congress to pass the National Plan to End Parkinson’s Act. She connects lobbyists, congressional staff, and advocates to empower people in the Parkinson’s community to share their stories and show Congress the need to prioritize support for Parkinson’s research, treatment, and care. Originally from Iowa City, Iowa, Megan attended the University of North Carolina at Chapel Hill and currently lives in Raleigh, North Carolina. She plans to soon move to Washington, DC, to continue her career in political communications for the public good.
More on the Michael J. Fox Foundation
Michael’s Story (MJFF, 2023).
Michael J. Fox, iconic actor, author and advocate whose Hollywood career has been marked by worldwide acclaim, honor and awards, launched the Foundation in 2000 after publicly disclosing his 1991 diagnosis, at age 29, with Parkinson’s disease.
Michael Andrew Fox was born in 1961 in Alberta, Canada. A self-described “army brat,” Fox moved many times during his childhood. His father retired from the Canadian Armed Forces in 1971 and settled the family in Burnaby, British Columbia. Michael joined the Drama Club in junior high and immediately showed natural talent as an actor. His theater teacher encouraged him to audition for a new Canadian Broadcasting Corp. series, Leo & Me. He won the part and began working steadily on TV and in l ocal theater in Vancouver. By 17, Michael left school and moved to Los Angeles to pursue his acting career.
There was a slight problem when he attempted to join the Screen Actors Guild (SAG) in Hollywood — another actor named “Michael Fox” was already a SAG member, forcing this new Canadian arrival to add a middle initial to his moniker. He ruled out “Michael A. Fox” for obvious reasons, and instead adopted the middle initial “J” as an homage to his favorite character actor, Michael J. Pollard.
After a few lean years, Michael landed the role of Alex P. Keaton on Family Ties. The series skyrocketed to one of television’s top comedies. Movie offers soon followed, including Teen Wolf and Back to the Future — the number one movie of 1985 and a role that brought him worldwide fame.
Michael won three Primetime Emmy Awards and a Golden Globe Award for his work on Family Ties. In 1988, he married his co-star, Tracy Pollan, and they welcomed their first child, Sam, a year later. During his 20s, Michael completed seven seasons of Family Ties and starred in 10 feature films, including The Secret of My Success, Casualties of War and several Back to the Future sequels. While filming Doc Hollywood in 1991, Michael developed a tremor in his pinky finger. A consultation with a neurologist revealed a surprising and devastating diagnosis: he had young-onset Parkinson’s disease (PD). He was only 29 years old.
Michael kept his illness under wraps for the ensuing years and worked steadily in movies, including For Love or Money, The American President, and Frighteners. In 1995, he and Tracy had twin daughters, Aquinnah and Schuyler. With a desire to remain closer to his growing family in New York City, Michael returned to series television as Deputy Mayor Mike Flaherty in ABC’s Spin City. The role won him another Emmy Award, three Golden Globe Awards, and two Screen Actors Guild Awards. During the series’ third season, Michael realized that he could no longer hide his Parkinson’s, which prompted him to reveal his diagnosis to the press and general public. After one more season of Spin City, Michael retired from full-time acting to focus on advocacy and fundraising for Parkinson’s disease.
In the fall of 2000, he launched The Michael J. Fox Foundation for Parkinson’s Research, which the New York Times has called “the most credible voice on Parkinson’s research in the world.” Today the world’s largest nonprofit funder of Parkinson’s drug development, the Foundation has galvanized the search for a cure and is a commanding voice in scientific philanthropy. To date they have raised over $1.75 billion dollars and moved the field closer to a cure.
In 2001, Michael and Tracy welcomed their fourth child, daughter Esmé.
After getting the Foundation on a steady course, Michael agreed to return to acting in supporting roles — as long as he could incorporate his PD symptoms into the characters he played. He took recurring guest roles on Scrubs and Boston Legal, and earned his fifth Emmy Award playing Dwight on Rescue Me. Six more Emmy nominations followed for his critically-acclaimed role as Louis Canning on The Good Wife, and for a hilarious turn as himself on Curb Your Enthusiasm. In 2009, he produced and hosted an Emmy-nominated special for ABC, Adventures of an Incurable Optimist, which he filmed throughout the United States, India and Bhutan.
Michael has spoken and written extensively about his predisposition to look at challenges, including his Parkinson’s disease, through a lens of optimism and humor. Michael’s autobiography, Lucky Man, became a New York Times number one bestseller. He wrote three subsequent best-selling books: Always Looking Up; A Funny Thing Happened on the Way to the Future; and No Time Like the Future. Three of his audio books were nominated for Grammy Awards, and in 2010, Always Looking Up won the Grammy for Best Spoken Word Album.
Michael is the recipient of honorary degrees from the following academic institutions: The Karolinska Institute in Sweden (which bestows the Nobel Prize in the sciences); New York University; the Icahn School of Medicine at Mount Sinai; the University of British Columbia; and Stony Brook University. He has received numerous humanitarian awards for his work, including inclusion in Time Magazine’s list of the 100 people who are transforming the world. In 2000 he was named GQ Man of the Year and received an appointment as Officer of the Order of Canada in 2010. Fox is the recipient of several lifetime achievement awards for accomplishments in acting, including the 2011 Hoerzu Magazine Golden Camera Award and the 2010 National Association of Broadcasters. In total, he has received 18 Emmy nominations and five wins; four Golden Globe Awards; one Grammy Award; two Screen Actors Guild Awards; and the People’s Choice Award.
In the fall of 2022, Michael J. Fox was presented with an honorary Oscar, the Jean Hersholt Humanitarian Award, by the Academy of Motion Picture Arts and Sciences.
A documentary film about his remarkable life will be released by Apple TV+ in the spring of 2023. (MJFF, 2023).
The Michael J. Fox Foundation (2023). Our Mission: Michael’s Story. Retrieved from https://www.michaeljfox.org/michaels-story
The Michael J. Fox Foundation (2023). Our Mission: Our Agenda. Retrieved from https://www.michaeljfox.org/michaels-story
The Michael J. Fox Foundation (2023). Our Mission: Our Promise. Retrieved from https://www.michaeljfox.org/michaels-story
The Michael J. Fox Foundation (2023). Our Mission: Our Impact. Retrieved from https://www.michaeljfox.org/michaels-story