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Real Talk from Participants

My Research Journey: How an Unexpected Diagnosis Led to an Online Community

Allie Signorelli

Allie Signorelli lives in Arlington, VA, with her husband Mike and two kids. She is a freelance nonprofit fundraiser and event producer by day, and a writer in her free time. In December 2022, she was diagnosed with Parkinson’s disease at age 47. She is a volunteer in the Foundation’s landmark Parkinson’s Progression Markers Initiative (PPMI).

PPMI is urgently recruiting people diagnosed with Parkinson’s in the past two years and not taking Parkinson’s medication. Learn more by calling 877-525-PPMI or emailing

For several months in 2020, I watched with equal parts amusement and curiosity as the big toe on my right foot would twitch. I’d be watching TV, and there it would be, rhythmically taunting me to worry about it. Let’s face it though, there was a lot to worry about then and my sassy toe was low on the list. Over the next two years, it traveled up to my ankle, then to my leg and eventually to my right arm and hand. Many doctor visits and multiple tests provided no answers, until late last fall when more symptoms appeared.

You know how your Great Aunt Betty whispers the words she finds too terrible to say loudly? That is exactly how my neurologist said this to me two weeks before Thanksgiving: “Has anyone in your family ever been diagnosed with… (whispers) Parkinson’s…. Allie?” I would have laughed out loud, but I was concentrating on not passing out. He told me not to panic (too late!) because it would be rare for a woman my age to be diagnosed with PD.

A follow-up visit to a specialist and a DaTscan confirmed that I have young-onset Parkinson’s disease. In shock, I curled up in my bed for several days feeling devastated, but then I got an email from my sister with a list of things she thought I should do to feel better. The first one was to join The Michael J. Fox Foundation’s PPMI study. I clicked on the link, learned more about this groundbreaking study, and signed up. It was a tiny step, but I realized that by giving back I might be able to find purpose in the difficult future I was facing.

In the months since I was diagnosed, I have embarked on a brain health and wellness journey to be as strong as I can be to hopefully delay progression for as long as possible. Exercising, eating well and finding a creative outlet by writing a blog and creating a Parkinson’s-focused Instagram community have helped me remain positive. And a team of great doctors are keeping my symptoms in check.

I hope that by sharing my story people will recognize that younger people and women are living with this disease, too. In fact, 40 percent of people with Parkinson’s are women, but we have often a longer time to diagnosis, less access to neurologists, and are underrepresented in research studies as compared to men.

As a Canadian and a child of the 80s, I was already a Michael J. Fox fan. I never thought I’d share this with him. But I am so grateful for the awareness he’s brought to this disease and the incredible progress The Michael J. Fox Foundation has made toward finding a cure. Studies like PPMI are critical to doing that and I hope you will learn more and sign up, whether you have Parkinson’s or not.

If you’ve been recently diagnosed with Parkinson’s, you can play a critical role in our landmark study. Call 877-525-PPMI or email to get started.

PPMI is open to anyone age 18 and up in the U.S. Learn more at

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