An interview with Denise Coley from PD Movers on August 6, 2023 by George Ackerman, Ph.D, J.D.
Biography
Denise Coley is the Founder & Co-Managing Partner of Enable Your Vision, a firm that provides supplier diversity consulting to drive economic vitality for diverse businesses, corporations, and the communities in which they reside.
For more than two decades, her leadership and vision has had a significant impact in the world’s global supplier diversity business development activities, but also those of the national and international supplier diversity communities. The supplier diversity communities benefited through her leadership, advocacy, mentorships, and programming all aimed at growing and sustaining their businesses.
Denise was diagnosed in January 2018 with Parkinson’s disease. I began researching Parkinson’s Disease daily since my diagnosis and every day since that date. I realized that there were gaps and began to think about possible solutions.
My husband and I attended The Parkinson’s Foundation Advocates in Research program (PAIR) now called the Parkinson’s Foundation Learning Institute that trains people with Parkinson’s disease and Care Partners to become involved in the research process, advising researchers on topics and helping design successful clinical trials. At the end of the program, I realized that I found a way to utilize my daily research on Parkinson’s disease. I became a Parkinson’s Advocate to drive awareness, education, resources, research to under-engaged communities.
Can you tell me more about your advocacy?
My husband and I started to repurpose our previous skills to drive Parkinson’s awareness. We became known as Team Coley: Denise, Person with Parkinson’s and Bernard, Care Partner. Some of my skills we repurposed were creating programs, connecting people, and working with diverse people both locally and globally to drive awareness.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is that I have Parkinson’s disease, so I am motivated to learn and help people. This is a passion. In the present moment, we want quality of life. Someday, in the future, we hope for a cure.
There are many people who do not know about Parkinson’s disease and the symptoms. I do not want people to suffer not knowing about the disease. I want people to know that ALL people can develop Parkinson’s disease (age, gender, ethnicities, cultures (globally). We need to reach out to provide information regarding the motor and non-motor symptoms. Encourage people to seek help, find that there is hope. We can thrive and have quality of life.
As long, as I am able, I will seize the moment to reach out and drive Parkinson’s awareness.
What type of goals do individuals with Parkinson’s awareness have when working with you?
Goals are:
- Reach those individuals and communities who are under-engaged and unaware of Parkinson’s disease.
- Provide information on the non-motor and motor symptoms.
- Provide information on education, and resources.
- Where to seek help if they have symptoms.
- Know that there are people who can help People who might have Parkinson’s, Care Partners, Community, and family in this journey.
What effect can your advocacy have on an individual with Parkinson’s awareness?
My husband and I are members of the PD MOVERS and our stories are included in the book. This book can be used as a tool to introduce people to Parkinson’s disease, what it is, people who tell their lived experiences, myths, and medical information.
THE PD MOVERS – WE KEEP MOVING storybook is a compilation of narratives of African American and Black individuals and caregivers who are living and thriving with Parkinson’s disease. The goal of the storybook is to inspire and connect individuals in the community by sharing the experiences of these remarkable individuals. We also hope these stories will educate others by removing the mysteries and misconceptions of Parkinson’s disease and provide useful resources regarding diagnosis and treatment to allow others to thrive with Parkinson’s disease.
https://www.neurology.columbia.edu/patient-care/specialties/movement-disorders/pd-movers-we-keep-moving-storybook
What would you like to see as a future goal for your advocacy?
GENERIC:
A future goal is that ALL people locally and globally have knowledge of Parkinson’s disease. They know where to seek help. They have access to medical professionals, medication education and resources.
RESEARCH:
A future goal is that ALL people are included in clinical research, that all therapy, treatments, and medications have been tested on ALL people.
What events do you participate in?
We participate in webinars, presentations, and events as a Person with Parkinson’s and Care Partner. There are many national and local organizations.
Some organizations:
American Parkinson Disease Association (APDA)
Brian Grant Foundation
Davis Phinney Foundation
Michael J Fox Foundation
Parkinson’s Foundation
Parkinson Movement Disorder Alliance (PMD Alliance)
World Parkinson’s Congress (WPC)
How does this also assist the caregivers?
Each of these organizations has resources for Care Partners. My husband is a Care Partner and has been a speaker in many webinars with many of the organizations listed.
How can someone get in touch? What is your website?
LinkedIn: https://www.linkedin.com/in/denisecoley1
Facebook: https://www.facebook.com/denise.bolden.coley
If you had one final statement or quote you could leave for the Parkinson community, what would it be?
“Hope and fear cannot occupy the same space. Invite one to stay.”