Scott Caputo saw firsthand how Parkinson’s disease (PD) affects not just the person diagnosed, but the entire family. His dad was diagnosed with PD after a long battle with throat and mouth cancer. Scott’s mom immediately stepped into a 24/7 caregiver role, while Scott and the rest of the family did whatever they could to support them both.

“It was tough for everybody,” Scott said. “My dad never lost his mental acumen or sense of humor, but we all saw this sort of slow onset of the disease and watched how it impacted him and, frankly, our whole family.”

After his dad’s diagnosis, Scott sought to learn about Parkinson’s and raise money for a cure, but his dad requested the family keep his diagnosis private.

“My father was one of the most engaging people I knew, but some of the symptoms of Parkinson’s made him turn inward,” Scott said. “It was tough to see this wonderful man who was a mentor, a role model and a friend to so many people shy away from the things he used to love to do because he didn’t want people to fuss over him.”

When his father passed away in 2017, Scott was introduced to the Parkinson’s Foundation by Penn Egbert, a Reach Further National Co-Chair whose father also had PD. Reach Further is a four-year fundraising campaign investing an additional $30 million to expand the Foundation’s reach while advancing research toward a cure and expanding community programs.

“When I met Penn, the timing was just right and he could not have been more welcoming,” Scott said. “The parallels between what our fathers went through were unbelievable and he really understood what I was going through. He introduced me to the Pakinson’s Foundation and I knew I wanted to be part of it.”

For Scott, the thing that stood out about the Parkinson’s Foundation was its focus on supporting everyone impacted by PD, including those living with the disease, family members, care partners and more.

“The organization is pushing to find a cure for Parkinson’s, but also helping people live better lives with this disease,” he said. “The educational and support resources for everyone involved with a Parkinson’s diagnosis really stood out to me.”

After several years of serving on the committee for a fundraiser supporting the Foundation, Celebrate Spring, Scott set out to do more and join both his friend Penn and Josh Raskin as a National Committee Member.

“It’s about raising awareness about Parkinson’s and about what the Parkinson’s Foundation is doing to support research toward a cure and care today for people with Parkinson’s,” Scott said. “Unfortunately, more people I know have family members being diagnosed with Parkinson’s. It’s becoming more prevalant and we need to do everything we can to get more people involved and raise money to support these important programs.”

Scott also wants people to understand that living well with Parkinson’s is possible, especially when people are connected to and utilizing resources from the Parkinson’s Foundation.

“It’s so important that people know that a Parkinson’s diagnosis is not a death sentence,” he said. “Parkinson’s affects everyone differently and there are so many resources out there to support people with Parkinson’s and their families. You are not alone with this disease and the community at the Foundation is here to support you.”

As a Reach Further committee member, Scott hopes he can raise more awareness, bring more people into the community and, above all, honor his dad.

“Once people see the impact the Parkinson’s Foundation has on people with PD and the incredible research they are supporting, I know they will want to be involved,” he said. “I’ve seen firsthand how the Foundation helps people and how you really get a return on your investment because you can see the impact your support has. My dad was my hero and he inspires me every day. I give back to the Parkinson’s Foundation in his honor, and I want more people to know about the incredible work the Foundation is doing.”

Help us Reach Further. Donate and check our campaign progress at Parkinson.org/Reach or call us at 1-800-4PD-INFO (1-800-473-4636).

The impact my father’s Parkinson’s disease (PD) diagnosis had on my family was severe and palpable. I’m an only child, so it’s just my mom, dad and me. Shortly after Dad was told he had Parkinson’s in 2018, there was an aggressive narrowing of their independence in the span of about 90 days. My mom became the primary caregiver to my dad, and luckily, I only live about an hour away, so since I’m fairly close I can be there at almost a moment’s notice to help when needed.

It was hard on all of us — the uncertainty and unknowns related to my dad’s diagnosis, but also the change in the family dynamic. My mom is a boss, she was a manager for Bank of America and had an interesting and awesome career. At home, though, she relied on my dad to make the house run. They experienced a role reversal, and it took us all some time to find a new path forward.

I work in Nasdaq’s San Francisco, CA, office. About six months before my dad was diagnosed with PD, my boss at the time, Jeff Thomas, whose father also has PD, organized a company happy hour to support the Parkinson’s Foundation Moving Day San Francisco event. In that first year, as we all familiarized ourselves with Parkinson’s, Jeff became a great resource and comfort since he had lived through what I was experiencing. He encouraged me to check out the Foundation’s resources and helped me get involved in Moving Day.  

Getting involved with the Parkinson’s Foundation felt like a way to do something for my mom. Living an hour away, I couldn’t be there every day to help take care of my dad, but raising awareness and money for Moving Day, and learning about resources from the Parkinson’s Foundation, gave my mom and I something to connect over outside of worrying for my dad.

Now, I am the California Chapter Advisory Board President and was the 2022 corporate chair for Moving Day San Francisco. I like participating in Moving Day because of the energy it brings to the office and the PD community. We’re just asking people to come out for a fun Saturday morning, bring your family and walk for a phenomenal cause. It’s an easy entry point to raise awareness and get more people involved.

I really appreciate the Parkinson’s Foundation mission and their commitment to helping people live well with PD. Things like the hospital safety kits and other resources provided to people with PD and their care partners and families make a huge difference.

The community I have met through the Parkinson’s Foundation and Moving Day San Francisco is made up of really exceptional people who have been so helpful. For anyone who is navigating a new Parkinson’s diagnosis or looking for resources and guidance, get involved with the Foundation and in your local community’s events. There are other people out there who have walked the same road, and making those connections is incredibly helpful.

Learn more about how you can become a Parkinson’s Foundation Ambassador.