An interview with Charlotte Allen: A Life Lived Loudly: Advocacy Through Experience
Biography
I’m Charlotte, founder of MYBOT, living with Parkinson’s for 23 years and working to bring lived experience into the center of care, research, and awareness.
I was diagnosed with Parkinson’s at 37, widowed at 36, and later survived stage 3 gallbladder cancer. My family lives with Parkinson’s too, which has shaped my advocacy and my determination to push for change.
Can you tell me more about your Advocacy?
My advocacy focuses on lived experience, education, and human‑centred understanding of Parkinson’s. I speak openly about the realities that never show up in clinic rooms and work to influence care, research, and public awareness.
Our Parkinson’s Film – 20 minute short film
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What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion comes from living with Parkinson’s daily and seeing how misunderstood it is. I became involved because families like mine deserve better understanding, better support, and real hope for a cure.
What type of goals do individuals with Parkinson’s have when seeing your Advocacy?
People often look for honesty, representation, and reassurance that their experiences are valid. Many want practical insight, emotional connection, and a sense of community.
What type of training and how long are the programs?
My advocacy isn’t a formal program; it’s ongoing lived‑experience education delivered through talks, writing, interviews, and collaborative projects with organisations.
What effect can your Advocacy have on an individual with Parkinson’s?
It can help people feel seen, understood, and less alone. It also empowers them to speak up, ask for better care, and recognize the value of their own lived expertise.
What would you like to see as a future goal for your Advocacy?
I want lived experience to become a standard part of Parkinson’s education for clinicians, researchers, and policymakers worldwide.
What events do you participate in?
I take part in awareness campaigns, interviews, advisory board discussions, and collaborative projects with Parkinson’s organisations and robotics partners.
How does this also assist the caregivers?
Caregivers gain validation, understanding, and practical insight into the unpredictable nature of Parkinson’s. It helps them feel recognized and supported.
How can someone get in touch? What is your website?
People can reach me through MYBOT’s channels or LinkedIn. MYBOT’s website is currently in development.
How can others also become advocates for awareness?
By sharing their stories, supporting campaigns, educating their communities, and speaking openly about the realities of Parkinson’s.
In your opinion, what is the key to effective advocacy?
Authenticity, consistency, and the courage to speak from lived experience even when it’s uncomfortable.
How can we better fundraise to support a cure for Parkinson’s?
By combining lived‑experience storytelling with research‑driven campaigns and building partnerships that reach beyond the Parkinson’s community.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
I use pacing, gentle movement, structured routines, and adaptive tools to manage symptoms and maintain independence.
Why should people who don’t have Parkinson’s care about this?
Because Parkinson’s is the fastest‑growing neurological condition in the world, and its impact reaches families, workplaces, communities, and healthcare systems.
Have you had any family members or relatives affected by Parkinson’s disease?
Yes—my partner Russ also has Parkinson’s, and my son Jacob has been a young carer since childhood.
If you had one song that would tell us more about you or represent your life, which song would it be?
“Rise Up” by Andra Day, because it reflects resilience, determination, and hope.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
You are stronger than the symptoms you face, and your lived experience is powerful—use it.
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TogetherForSharon® In memory of my mother, Sharon to voice awareness & hope for a Parkinson’s Disease cure. Sharon’s Son, George
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