An interview with Shan Havins: Rewriting the Rules: Parkinson’s, AI, and the Power of Showing Up.
Biography
Shan Havins is a researcher, founder, former national lab leader, wife, mother, athlete, and advocate living with young onset Parkinson’s disease. Diagnosed in 2023, Shan channeled her expertise in technology, innovation, and systems thinking into building Thrive Well Together (TWT), a healthtech company that reimagines how patients and care partners navigate life after diagnosis. She believes that care should be accessible, emotionally intelligent, and rooted in lived experience, and she’s on a mission to make that version of care available to everyone.
Please tell me a little about your background
My professional background includes over 15 years of leadership in research and innovation, most recently in a U.S. national laboratory focused on critical infrastructure, sustainable energy, and cybersecurity. Before that, I spent a decade working in long-term care with patients experiencing Alzheimer’s and dementia. I hold multiple degrees in IT and a PhD in Technology and Innovation Management. I’m also a mom, wife, Parkinson’s patient, and the founder of TWT, a company that was born out of both my professional knowledge and personal experience.
Can you tell me more about your organization?
TWT is a healthtech startup creating AI-powered care companions for people with chronic illness. Our first tool, AskShan, provides 24/7 conversational support to people living with Parkinson’s and their care partners. We currently offer a completely free conversational care companion, and will soon add optional memberships for those who want more tailored support. Our goal is to ensure that no one navigating Parkinson’s feels alone or overwhelmed by the complexity of care.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
When I was diagnosed with young onset Parkinson’s in June 2023, it completely shifted my future. I immediately applied for my training as a researcher and systems builder to understand the disease and to redesign my approach to it. My passion now is to make sure that others don’t have to go through that process alone. I want to make reliable information and emotional support accessible to every person with Parkinson’s and every care partner.
What type of goals do individuals with Parkinson’s have when working with you?
People come to us looking for clarity, support, and connection. Their goals often include finding reliable, peer-informed information; tools to help them advocate for themselves in the healthcare system; and community connection that supports their emotional well-being. They want to feel seen, not just managed.
What type of training and how long are the programs?
AskShan is designed to be accessible at any stage of the Parkinson’s journey. Our tool is available for free, and our optional memberships will include more personalized support. There is no required program duration. People engage with the platform as they need it, whether for moments of daily support or long-term guidance.
What effect can it have on an individual with Parkinson’s?
TWT helps reduce overwhelm and decision fatigue by offering trusted, timely, and emotionally intelligent support. Users have said AskShan helps them feel seen, validated, and equipped to make choices about their care. It can also be a powerful companion for navigating grief, identity shifts, and long-term planning.
What would you like to see as a future goal for your programs?
I would love to see our free tool reach every single person who needs it. We don’t want anyone impacted by Parkinson’s to feel alone or under-resourced. We also plan to give back to Parkinson’s research in meaningful ways. The information that is put into our tool is automatically anonymized, and we have plans to analyze this anonymized, contextual data on an ongoing basis to identify trends in Parkinson’s that cannot be effectively collected outside of a conversational space.
In the future, we would also like to expand beyond Parkinson’s into other chronic illnesses while maintaining our commitment to personalized care. Our big-picture goal is to help redesign chronic illness care in a way that honors people’s stories, autonomy, and emotional needs as much as their physical ones.
What events do you participate in?
I’ve participated in the Brian Grant Foundation’s storytelling initiative, regularly speak on Davis Phinney Foundation panels, am a Davis Phinney Foundation Ambassador, and engage in educational and advocacy events focused on digital health, neurodegenerative research, and ethical AI.
How does this also assist the caregivers?
Care partners can use AskShan just like patients can. We also offer specific grief, communication, and care planning resources tailored to the needs of care partners. Many have told us they feel supported just knowing there’s a space designed with them in mind.
How can someone get in touch? What is your website?
Website: https://thrivewelltogether.com
Email: shan@thrivewelltogether.com
Social: Thrive Well Together on Facebook, Instagram, and LinkedIn
How can others become advocates for awareness?
Start by listening to people with Parkinson’s. Share their stories. Talk about the reality that Parkinson’s can impact any of us, at any time, and any age. Use your voice on social media, in your community, or through organizations. Most of all, keep learning and stay open to new possibilities.
In your opinion what is the key to effective advocacy?
Meeting people where they are (in grief, in uncertainty in strength) and helping them feel seen. Effective advocacy brings together practical tools with deep empathy. It doesn’t just inform; it supports and connects.
How can we better fundraise to support a cure for Parkinson’s?
Partner with organizations that prioritize both care and cure. Support those doing open-access research. Create community-based campaigns that educate while inviting action.
What other activities do you undertake to support daily living?
I try to move every day. Even simple things like walking, dancing, and balance and mobility work make a huge difference for me. I use breathing techniques, mindfulness, and somatic exercises to manage anxiety and pain. And I stay connected with others through one-on-one conversations, outreach, and storytelling, which helps me process the emotional layers of life with Parkinson’s.
Why should people who don’t have Parkinson’s care about this?
Because Parkinson’s is one of the fastest-growing neurological conditions in the world, and its leading risk factor isn’t genetic, it’s environmental. Anyone could be affected. Curing Parkinson’s benefits all of us, not just the diagnosed.
Have you had any family members or relatives affected by Parkinson’s disease?
As far as I know, I was the first. But now, everyone in my family has been affected by my diagnosis, and by the changes it has brought into our lives.
If you had one song that would tell us more about you or represent your life, which song would it be?
“Happy to be Here” by Wookiefoot. I know that things are hard and there is a lot of work to be done, but at the end of the day, I am just happy to be here.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
We don’t get to choose the stories we’re handed. But we do get to choose how we write the next chapter. And we don’t have to write it alone.