John Andrejack, PAIR for the Parkinson’s Foundation: This Is A Message Of Hope!

An interview with John Andrejack, PAIR for the Parkinson’s Foundation: This Is A Message Of Hope! on February 20, 2024 by George Ackerman, Ph.D, J.D.


John is 57 years old, a lifelong educator, husband, father of an amazing atypical kid, Patient Advocate in Research (PAIR) for the Parkinson’s Foundation, and a person living and thriving with Parkinson’s Disease.


More About John:


John Andrejack lives with his wife Kate Lynch (a professional meditation and yoga instructor and mindful parenting coach who helps parents of atypical kids), and their son, Ocean in Brooklyn, New York. He is a motivation speaker who presents workshops on Hope Theory. John holds an Ed.D. from Teachers College, Columbia University and serves the Director of Student Advocacy at Queens College, CUNY.


Parkinson’s Foundation:


The Parkinsons Foundation is dedicated to making life better for people with Parkinson’s disease. The foundation provides support for Parkinson’s disease patients and their caregivers, advocates for and financially supports research toward better treatment, and finding a cure, while simultaneously utilizing patient experts to improve research design and the experience of research participants.


What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?


My passion is to contribute in some small way to research towards improving the treatment of symptoms for People with Parkinson’s disease (PWP) and eventually towards finding a cure. Somewhere in my early to mid-30s, I began to show the signs of young onset Parkinson’s disease (YOPD). It all started with a small tremor in my right middle finger. My doctor asked me some questions about it and determined that it was a familial tremor since at least five other people in my extended family had the same condition. In the next few years, other symptoms developed. I had several cases of frozen shoulder, lost my sense of smell and then, my right arm stopped swinging naturally and I shuffled my feet when I walked. After several doctors misdiagnosed me, I finally found my way to Jori Fleischer at the NYU Movement disorder, center. At age 47, I was diagnosed with young onset, Parkinson’s disease (YOPD).


When I asked Jori what I could do, she told me that I might be able to slow the progression with the proper diet and exercise regime. I thought to myself, “that’s all I can do? There must be more, there must be something else that I can do…” A few days after my diagnosis, I received a call from Jori. She sensed something was wrong from the way I took the diagnosis and her answer to my question about what I could do. She told me that she got the sense that I was the type of person who would feel better If I was involved with helping design and promote research studies. I agreed. She told me about an upcoming training for Patient Advocates In Research for the Parkinson’s Foundation. I completed the application, was accepted, and in a few months, went to a weekend training to be an advocate.


In the last eight years, I have counseled newly diagnosed people with Parkinson’s disease, taken part in research design, spoken at foundation events, and even co-published an article in the Journal of Parkinson’s disease with Dr Soania Mathur. I was one of 10 patient experts, who worked on a multi-year project with the Parkinsons Foundation, Parkinsons UK and UCB to redesign the patient reported outcome (PRO) scales for newly diagnosed PWP. UCB is currently seeking approval from the FDA for these instruments.


What are the goals of people with Parkinson’s disease who I work with?


Most of the people I work with want to continue to work, provide for their families, live a rewarding life and contribute towards finding a cure. They want the same thing everyone else wants. To raise a family. To be a good partner to someone they love. To have a long and meaningful career. To look back on a life that meant something. To make a difference. Most of all, NONE of them want to be told that they cannot have everything that someone without Parkinson’s disease can.


What type of training programs are there and how long are they?


I took part in it two day, in-person training to be a PAIR with the Parkinsons Foundation. The trainings are now offered in different formats, including one that is completely online. I learned about research design and clinical trials. I learned about the different phases of clinical trials, and how to advocate for the input of patients in the design of clinical studies.


What impact does involvement with the Parkinsons Foundation have on people with Parkinson’s disease?


For those who are advocates, the foundation provides us with an experience in which we\e can make a difference. I can look back on any experience that I have had with the Parkinson’s Foundation see what was accomplished, and honestly say, “I contributed to that. I made a difference.” For our fellow PWP, our work as advocates will hopefully make a contribution that leads to better treatment for symptoms, and eventually a cure. When it comes to involvement in research design, hopefully this will result in better experiences for patients who become involved in clinical trials.


What would you like to see as the goals for future programs you are involved in?


A cure for Parkinson’s disease.


What events do you participate in?


I generally speak on behalf of the foundation at events geared towards people with Parkinson’s disease. I have also been on patient panels to assist pharmaceutical companies with research design, and input on television commercials for new medication.


How does this also assist caregivers?


The Parkinsons Foundation also has separate events, trainings, and webinars geared toward caregivers.


The best way to reach me is via my email address I also have a blog, entitled, “A Day In My Life With Parkinson’s Disease.”


How can others become advocates for awareness?


I encourage people with Parkinson’s disease, their caregivers and family members to become involved with the Parkinsons Foundation. In addition, they can blog, post on social media, publish articles and live their life in the open. There are several stereotypes and misconceptions about people with Parkinson’s disease. Most people are not aware of young onset Parkinson’s disease (YOPD). Many people still think that Parkinson’s disease is a condition only associated with aging. I want to tell people with Parkinson’s disease that they have done nothing wrong. That they have nothing to be embarrassed about. That they do not need to live their life in the shadows. I want people with Parkinson’s disease to show the world what we can do.


What question would you have added to this interview? What else are you doing in your personal life to contribute to Parkinson’s disease research?


For the last three years, I have taken part in the clinical study for PRODUODOPA the first subcutaneous 24-hour infusion of levodopa-based therapy for the treatment of Parkinson’s disease symptoms. The study continues in the United States while AbbVie seeks FDA approval. In the UK, however, NHS has shipped the first thousand pumps to people with Parkinson’s disease. The treatment has greatly improved my quality of life. Being involved in a clinical study gives me a sense of satisfaction. It helps me to know that I am actively working towards making a difference. I hope that someday I will see many PWP benefiting from symptom relief, provided by pumps, patches and implants.


How important is advocacy?


To answer a question with a question: “Where would people with Parkinson’s disease be today without Michael J Fox?”  Without advocacy, people with Parkinson’s disease would be ignored.