An interview with Miriam Bram from Shaking up Parkinson’s on September 13, 2023 by George Ackerman, Ph.D, J.D.
I was diagnosed with Young Onset Parkinson’s disease (YOPD) in 2008 at the age of 44. At the time, I was a mother of two young children ages 5 and 3. I spent the past four years serving as an Ambassador for the WPC Barcelona in July 2023. I am a member of PD Avengers, Young Onset Parkinson’s Network (YOPN), and I participate and perform in a Parkinson’s Improv troupe. Check out my blog at www.shakingupparkinsons.com. I am an avid cyclist and also enjoy swimming, yoga and hiking. I live in Manhattan and Amagansett, NY with my husband, (two daughters in college) and our Cavapoo Winnie.
Please tell me a little about your background.
I was raised in the suburbs of New York and received a Psychology from the University of Michigan. I lived in Manhattan and had a 15-year career in financial public relations. After a 3-year stint in San Francisco, I returned to Manhattan and pursued a degree in holistic health counseling.
Can you tell me more about your advocacy?
After attending both the 2016 and 2019 World Parkinson Congresses (WPC), I was inspired to become a Parkinson’s advocate. I joined WPC as an ambassador in 2020 for WPC Barcelona in July 2023. My work over the past four years, centered on speaking at conferences, attending fundraising events, volunteering on committees, presentations at support groups and other Parkinson’s non-profits and foundations. Additionally, I worked and participated in the Parkinson’s Unity Walk, helping both WPC and PD Avengers booths; I gave a presentation to Young Onset Parkinson’s Network and was featured as a member spotlight.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is to create a space for people with Parkinson’s to feel a sense of belonging. By sharing my story with the Parkinson’s community through my blog site www.shakingupparkinsons.com, I believe I am educating people about YOPD. I post personal stories or vignettes that are honest and intimate reflections on living with Parkinson’s disease. My hope is that my stories will resonate with others who live with PD and educate others and reduce the stigma associated with the condition.
What effect can your advocacy have on an individual with Parkinson’s?
In my opinion, the work of one Parkinson’s advocate can have a ripple effect. I was so impacted by the vibrant community that I met at the three WPC’s I attended. There are so many resources being offered and organizations that are being formed to help people interact and find community. Many PD patients find themselves isolated, which can be a risk factor and joining a support group, for example, can change their lives. The more people that engage in the community whether through activities, fundraising or research, the closer we will get to a cure.
What would you like to see as a future goal for your advocacy?
A future goal I would like is to be a voice for the YOPD community. I want to help drive awareness of the importance of exercise, community, and participation in research. I would also like to be a mentor to those who are newly diagnosed. My goal is to see more and more people with PD engaging in the many resources available and spread the word to marginalized communities in need of healthcare providers and medication.
What events do you participate in?
I attend the Michael J Fox Foundation annual gala; I participate in promoting the World Parkinson Day on April 11; I attend the World Parkinson’s Congress and Parkinson’s Unity Walk in Central Park every April; I am a member of Young Onset Parkinson’s Network; I participate fundraising events like PedalingforParkinsons every June, in which I cycle 100 miles. I’m also a member of a Parkinson’s Improv Troupe and Ping Pong for Parkinson’s.
How does your advocacy also assist the caregivers?
Caregivers need a place to go to feel a sense of community. They are often isolated and benefit from learning opportunities and social gatherings. Making such events visible and accessible is a form of advocacy.
How can someone get in touch? What is your website?
My website is www.shakingupparkinsons.com and you can sign up to subscribe on the site. You can also follow me on FB and Instagram at @miriambram and @shakingupparkinsons.
How can others also become advocates for awareness?
There are many ways to become advocates for awareness. Signing up as a PD Avenger is a good first step. The website is a great resource and immediately connects you with a global community. There are events and projects to get involved with and many non-profits and foundations that are available to work with. Some of these include Young Onset Parkinson’s Network, PMD Alliance, Michael J Fox Foundation among others. Look at your local chapter of the Parkinson’s Foundation.
In your opinion what is the key to effective advocacy?
Anytime you are talking about your Parkinson’s, attending community events, or participating in a fundraiser, you are being a Parkinson’s advocate. Also, don’t underestimate the power of telling your story.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Live your life in the now. Reflect on what is important to you to accomplish and do it. Write down your goals and dreams. Let your inner light shine.