Journey with Parkinson’s: Adding a New Journey

“Only I can change my life. No one can do it for me.” Carol Burnett

“It needs to be said and heard: it’s OK to be who you are.” Hailee Steinfeld

 Adding a New Journey: In the preceding blog post, I spent a considerable amount of time writing about the quality of life, self-management of our symptoms, and the impact of stress on everything, including advancing the disorder’s symptoms (click here to read this blog post). Thus, if you are adding something to your life, then you must be willing to take something else out of this equation you follow. This means that you should not add a new task to your life without seriously considering the time factor, stress potential, and effect on your current quality of life.

“The best time for new beginnings is now.” Unknown

Introduction to a New Beginning: Besides my teaching this semester, the absence of blog posts has been due to a lack of ‘other’ time to think, write, and publish. Why? Two reasons. First, we have been researching and writing a new review article on the effect of SARS-CoV-2 (COVID-19) on Parkinson’s, which was recently submitted for publication. Second, I spent my free time working on an idea from December 2021 through early March 2022. Going from a few lines from the Federal government grants this tax-free idea status by bringing it to life. You may already have heard, but I applied for and got approved for a new non-profit organization named “Frank C. Church Foundation for Parkinson’s Disease.” 

Okay, why do we need another organization for Parkinson’s? Why now? When I look across the board at the ‘biggies’ like Michael J. Fox Foundation and the National Parkinson Foundation, I see great things. I sense real commitment from them, but I also see gaps and holes where another organization could step up and provide service, information, or funding. Thus, I felt there was a need to help those with Parkinson’s and their Care Partners. Also, help those who want to work in neurosciences. Finally, to provide additional means of education to anyone about neurodegenerative disorders.

“I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself and others like me.” Maya Angelou

Starting a Non-Profit Organization: I started with an idea more than two years ago. I started by attending an entrepreneurial workshop on campus, a morning retreat with all of the know-it-alls on my campus. It was an eye-opener to see how many companies and non-profits had already been formed and existed at the University of North Carolina at Chapel Hill. It made my idea of a non-profit seem minuscule, but the group gave me much-needed advice on the steps. It led me to a law school professor who teaches a course in the fall semester on Corporation Law. I was allowed to work with two third-year law students. They did all of the work and organization for starting and getting approved the non-profit organization, first in the State of North Carolina and then in the United States.

These law students were most efficient and organized and had their act together. They had a strict timeline to getting everything done for the Foundation. It was timed to be within the semester. They were busy, and we had frequent Zoom-based meetings (as expected, the COVID-19 pandemic allowed us only online meetings). Starting in October 2020, we got approved the existence of the Organization in the State of N.C. We obtained an Employee Identification Number (EIN) from the Federal Government. We composed the bylaws of the Organization. We then formed a Board of Directors and held the first meeting. We then filed for federal status, asking for exemption as a tax-free 501 (c) (3) non-profit organization. Maybe these steps were standard fare, but it was new for me. However, we got everything accomplished with their organizational skills, work ethic, and drive. I eventually heard that the U.S. government had approved our request to be a non-profit by spring 2021.

“Life is not so much what you accomplish as what you overcome.” Robin Roberts

The Mission Statement and Goals of the Foundation Aligned with Parkinson’s:  Undoubtedly, an organization’s mission statement speaks to the heart of what is essential to those who started or are involved in such a non-profit organization. The mission statement for this Foundation is as follows:

“To improve the quality of life for those with Parkinson’s disease and other brain disorders, support student training in the neurosciences, provide educational help and life-skills advice, and increase awareness of neurodegenerative brain diseases.”

Without giving out the detailed goals of the Foundation (not just yet), here are the broad-based goals as in our original charter:

  1. Generate scholarships and fellowships for health care-directed students to participate in either clinical or basic research settings studying Parkinson’s.
  2. Offer guidance on exercise, nutrition, mind-body meditation, and Integrative Medicine and Health Therapy to help you best manage Parkinson’s.
  3. Provide education/support to enable you to understand Parkinson’s, and atypical Parkinsonian syndromes, better.
  4. Improve the quality-of-life for PwP, care-partners, and families.

“You can’t go back and change the beginning, but you can start where you are and change the ending.” C.S. Lewis

The Principles of this Parkinson’s Foundation are in the Core Values: The Core Values of the Foundation reflect the vital principles of (a) staying healthy, (b) maintaining a positive attitude, (c) remaining resilient, and (d) always caring.  Thus, the Core Values are described in the word “HOPE,” which is used as an acronym for Health, Optimism, Perseverance, Empathy.

“Life’s most persistent and urgent question is, ‘What are you doing for others?'” Martin Luther King, Jr.

Contact Information About the Foundation: Part of the time spent during the past few months has focused on generating a website, getting email set up, a donation site established, and a functioning website for everything. It may not seem like a lot, but with only me doing it all, the tasks just add up. Here is the relevant information:

Website for the Foundation: https://frankcchurch.org/
Email for the Foundation: frankcchurch.PD@gmail.com
Foundation blog, go here: Click here;
Facebook Page for the Foundation: (Click here)
GuideStar Charity Site for direct donation: (Click here).
AmazonSmile Charity; while you shop online at Amazon.com, one can make a charitable donation to the foundation: you will be asked if you want to support the “Frank C. Church Foundation for Parkinson’s Disease:” (click here for this charity link).

This may be somewhat repetitive, but having access to this information is the only way to decide if you want to support the Foundation or one of its specific projects. The Board of Directors encouraged me to pursue two ideas initially, then see how it goes. Progress has been made on one project related to mindfulness meditation. The project has almost reached the stage where it can be shown to others, but not quite yet. Conversations on the second project associated with low health literacy have begun. Please stay tuned to the Foundation’s website for updates on prototypes and other information.

“If you feel like there’s something out there that you’re supposed to be doing, if you have a passion for it, then stop wishing and just do it.” Wanda Sykes

The Foundation Logo:

“One day or day one. It’s your decision.” Unknown

The New Beginning: As one career ends, a new chapter is opening up for me. This is not an endeavor that can be done alone. You may not obtain all of your dreams. But keep dreaming and keep working hard to achieve those dreams. Believe in you and those who offer their love and friendship because their support may help to reach a goal (dream) one day ahead. Therefore, anyone interested in helping us get started with achieving our initial goals, planning for the future, and fundraising activities, please contact me.

In conclusion, I have the same feeling for starting this non-profit organization that I do concerning my daily life with Parkinson’s: Life today requires strength, positivity, and a thought-filled plan. Life today with Parkinson’s needs the same traits but with added persistence. Thus, a new journey coincides with a new beginning.

Sometimes you’ve got to let everything go – purge yourself. If you are unhappy with anything… whatever is bringing you down, get rid of it. Because you’ll find that when you’re free, your true creativity, your true self comes out”. Tina Turner

Cover photo credit: Frank C. Church and a Bermuda ocean view.

5 Replies to “Journey with Parkinson’s: Adding a New Journey”

  1. What a fabulous ambitious endeavor! Would love to see efforts made for ‘the cure’ as that is what we all would dearly love to happen ❤
    Your writing is so well done and inspiring. Best wishes on your new endeavor.

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  2. Always an inspiration to read your blog Frank. Dealing with the change Parkinson’s imposes on our lives is the hardest challenge I’ve ever had to cope with. I’ve said it before, understanding the science is the easy bit……however the psychological impact is huge. All your work on mindfulness, building resilience, educating on disease management, the benefits of staying as active as possible and managing stress is so holistic and so vitally important. I’m excited to follow your journey with your new foundation. All good wishes for your new beginnings! Wendy from Yorkshire, UK

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    1. Wendy, thanks very much for your thoughtful note. It is most appreciated, thank you. There is nothing more potent than the mind-brain interaction; however, the loss of dopamine disrupts this all-important interaction. The science of our brain is both exciting and complex. Still, you are correct about the role and impact the principles of psychology have on how well we handle the PD diagnosis and how well we manage to live with PD. Thanks too for the good wishes for the Foundation. We need to start slow and focused as the new journey gains a little traction. Stay tuned because I think you will especially enjoy the first project description since its goal is to help manage better the stress of life with Parkinson’s. Best wishes, Frank

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