An interview with Allison Signorelli on Advocacy & the Michael J. Fox Foundation on October 18, 2023 by George Ackerman, Ph.D, J.D.
I am a 49-year-old fundraiser, writer and event producer living just outside of Washington, DC with my husband and two teenagers. I was diagnosed with Young Onset Parkinson’s in December 2022 after having symptoms for two years.
Can you tell me more about your advocacy?
I realized shortly after I was diagnosed that a common misconception is that Parkinson’s is only a disease of aging – that primarily affects older men. I decided to do my small part to help change this perception – along with many others who have been saying this for many years. I added my voice to this effort by creating an Instagram page to show people that there are many of us who were diagnosed earlier in life who are. balancing busy working lives with a complex brain disease.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
About a week after I was diagnosed, my sister suggested I get involved with the effort to find a cure to make myself feel better. I joined the Michael J. Fox Foundation PPMI study, which was a great first step. I also signed up for the Parkinson’s Foundation Revolution Ride and raised $12K from friends and family for that event. Getting involved so quickly made me feel more confident and excited about my future I am happy to have become more involved with the Fox Foundation since then including being featured on their social feeds highlighting the importance of participating in research.
What type of goals do individuals with Parkinson’s have when seeing your advocacy?
I want to continue building the community I have created online which currently has more than 46k people in it. I want it to be a place that is supportive and positive and fun. Life is hard – not only for people with PD but for everyone – and my goal is to find the lighter parts of this path I’m on while still being honest about the challenges I face.
What effect can your advocacy have on an individual with Parkinson’s?
For me, advocacy is a tangible thing I can control. Because Parkinson’s has no cure, it sometimes can feel hopeless and helpless. Advocating gives me the power to hopefully change my future and that allows me to find hope in my everyday life.
What would you like to see as a future goal for your advocacy?
Currently, I am focusing my advocacy efforts on raising awareness about PD online while also actively encouraging my members of Congress to pass the National Plan to End Alzheimer’s Act. I am hopeful it will be passed by the Senate this year.
What events do you participate in?
I recently completed the Walt Disney World 1/2 Marathon on January 6th where me and my family and friends raised more than $10K for Team Fox and I plan to do the Revolution Ride again on February 25th
How does your advocacy also assist caregivers?
Caregivers are VITAL and need support! As part of my professional life, I have been involved with caregiving advocacy for the past 10 years – primarily focused on Alzheimer’s. Care partners are often burned out and do not prioritize their health. Talking more about the daily challenges they face is important and I plan to do more of that in 2024.
How can someone get in touch? What is your website?
Follow me on Instagram at @imstillallie or visit my website www.allisonsignorelli.com
How can others also become advocates for awareness?
Share their diagnosis story if they are willing. Talk about PD openly if they can. Sign up with a nonprofit who is leading advocacy efforts and get involved!
What is your secret talent, Allie?
WOW! Thanks for asking. I happen to be a singer and studied opera in college. I used to live in NYC and performed on off-off-off Broadway. 🙂 Also, I’m half Canadian – and therefore inherited the funny gene. Or so I tell my kids.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
I love this quote by Michael J. Fox “With gratitude, optimism is sustainable.” It is what I live by these days!