In order to understand Parkinson’s more fully, we must recognize the diversity of all people who are living with the disease, and use the experiences of those caring for their loved ones to inform our work to urgently find a cure for the disease. Nearly 1 million people in the United States live with Parkinson’s disease (PD) — each of them with diverse backgrounds, of different races, ages, ethnicities and gender.
This May, in recognition of Jewish American Heritage Month — a time for paying tribute to the generations of Jewish Americans who have helped form the fabric of American history, culture and society — The Michael J. Fox Foundation (MJFF) is sharing stories from our community, including the stories of citizen scientists who have embraced research opportunities to help accelerate progress in Parkinson’s research.
Genetic traits are passed down through generations of families, and some particular ethnic groups like people of Eastern European (Ashkenazi) Jewish descent, have a higher likelihood of having a LRRK2 genetic mutation — one of the most common genetic contributors to PD. Though a minority of people with Parkinson’s have an identified genetic mutation (like LRRK2), researchers are learning from those who do. The Foundation has made significant investments in learning more about the role of LRRK2 in PD through our research funding strategy and sponsored studies — the Parkinson’s Progression Markers Initiative (PPMI) and Fox Insight.
Barbara Robinson, MD, is a participant in PPMI, MJFF’s landmark clinical study. With her mother and brother both living with PD, Barbara shares in an op-ed for the Jewish Exponent why it was important to learn her genetic status because of her heritage:
“We've made this commitment because we know the only way we're going to fight this disease is with knowledge, and this kind of data is our best hope for unlocking the key to new therapies. If we're not willing to volunteer that data, then nothing is ever going to change.”
For some research advocates, participating in clinical studies is about taking action in honor of a parent who lived with the disease, like PPMI participant Judy Wattenberg who discovered her genetic mutation could fuel discoveries in Parkinson’s research:
“If we can prevent Parkinson’s or help diagnose it earlier, it would help so many people. It’s so unusual to be able to do something hands-on to help people. I want to contribute and participate because I can.”
People with and without Parkinson’s are all part of the puzzle in the quest for a cure. PPMI participant Jessi Keavney, who joined the study to support her father who has Parkinson’s, explains how her genetic status makes her feel empowered:
“I’m not scared knowing my genetic status; instead I’m empowered. I don’t want to hide from the disease. I want to fight it. Plus, there is a good chance I will never develop Parkinson’s. Either way, I know my data is valuable to researchers. If I don’t get Parkinson’s, it is important to know why I didn’t when others with the mutation do.”
Throughout Jewish American Heritage Month and beyond, MJFF celebrates the experiences of our diverse community. Continue to browse stories all year long to learn how the Parkinson’s community is working tirelessly to end PD.
Interested in participating in genetic research? MJFF’s online clinical study Fox Insight is accelerating breakthroughs by capturing the experiences of people with and without Parkinson’s. Through a collaboration with consumer genetics company 23andMe, people with Parkinson’s who join Fox Insight can access the 23andMe Health + Ancestry Service at no cost and add their genetic information to the study. Register at foxinsight.org.