Neuro Challenge Foundation for Parkinson's: How A Community Can Help You on Your Journey

Editor’s note: This blogpost was written as a part of Ringling College of Art and Design’s Storytelling for Community Engagement: Ringling Student Views course, fall semester 2022, led by instructor Sylvia Whitman. Students were paired with nonprofits to learn about their mission and impact, and the post that follows shares the story of Neuro Challenge Foundation for Parkinson's.

The project was completed as part of a collaboration with The Glasser/Schoenbaum Human Services Center. Many thanks to Charlene Altenhain and Sarah Glendening, especially, for their coordination of student writers to nonprofit organizations.

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Founded in 2008 as a kitchen-table advocacy group, Neuro Challenge Foundation for Parkinson’s has grown into a robust nonprofit that serves, free of charge, more than 3,000 people in this region affected by Parkinson’s disease (PD) each year. Neuro Challenge is dedicated to improving the quality of life of people with Parkinson’s and their care partners by providing educational resources, therapeutic programs, and support groups for people with the disease, care partners, and families.

Carolina Murphy, client turned advocate, raised a family and worked as a director of admissions at a sports training academy for 20 years before launching the school’s parent and alumni administration. In 2015, at age 58, she was diagnosed with Parkinson’s disease, a neurodegenerative disease that worsens over time.

More than 1.5 million Americans suffer from PD, which results from damage or loss of brain cells. This leads to a drop-off in dopamine, a chemical that enables the smooth functioning of muscles. The course of the disease varies from one individual to another, with symptoms that range from shaking and imbalance to muffled speech, fatigue, and depression, according to Dr. Dean Sutherland.

After a difficult year trying to manage her condition and her job, Carolina decided to retire. She found support from Neuro Challenge Foundation soon after she and her husband moved to Sarasota in 2016. Helping with an event for Painting with a Twist, she struggled to separate the paper plates she was putting out and confessed to the neighbor planning the party that she had Parkinson’s. That neighbor led her to a Neuro Challenge volunteer, and within two weeks, Carolina was talking with a specially trained Neuro Challenge care advisor about where to go from there.

A Neuro Challenge care advisor provides free individualized care to the Parkinson’s community. Given the uncertain trajectory of PD, patients and families do better to focus on the “right now’s” rather than the “what if’s” for their long-term well-being. Carolina started participating in Neuro Challenge Foundation support groups and took up boxing to improve both her balance and strength. Carolina also participates in educational and therapeutic programs, attends webinars and virtual programs, and never misses the annual Parkinson’s Expo.

During the pandemic, a lot of face-to-face programs had to be put on halt, so to ensure she kept moving, Carolina started a weekly Zoom exercise group with some of the other women in her boxing group. This not only continued their exercise routine but the social support they receive from each other as well.

Carolina also belongs to a Neuro Challenge women’s support group. “This group provides a safe place where you can share, and there is no judgment,” she says.

Neuro Challenge strives to support communities where other resources are not available for people with Parkinson’s. It serves multiple counties throughout Florida, with offices located in Sarasota, Bradenton, and Port Charlotte. Neuro Challenge also serves people online all around the nation and the world.

Neuro Challenge provides a variety of programs that are always free, thanks to donors, sponsors, and partners. Educational and therapeutic programs, as well as support groups, give people with Parkinson’s the tools they need to navigate the complexities of the disease and empower them to live a better quality of life on their Parkinson’s journey. Support groups provide a community of caring and support and a place to share ideas on ways to adapt daily activities that can be affected by Parkinson’s.

Neuro Challenge for Parkinson’s doesn’t have a main facility; it wants to serve clients where they live in their community, without too much driving. Free programs and services are provided in- person at community offices, partner locations, or public places—as well as virtually, through Zoom and over the phone. “If you have Parkinson’s, then Sarasota is the place to get help,” says Carolina.

This past December Carolina spoke at Neuro Challenge Foundation’s Cause 4 Fashion, an event at the Van Wezel which showcases empowered members of the Parkinson’s community on the runway and raises money for personalized care and support programs. The nonprofit’s signature event is the Parkinson’s Expo, the largest Parkinson’s education and networking event in the nation. In 2020, just before the pandemic lockdown, about 1,500 people attended in person. In 2021 Neuro Challenge had its first virtual event, live-streaming with about 1,200 people. In March 2022, Neuro Challenge staged a hybrid event, with about 550 participants in person and 1,200 online. Going forward, the Parkinson’s Expo will operate both virtually and inperson.

The organization's vision is that all people with Parkinson’s are empowered members of an inclusive and caring community. Neuro Challenge Foundation strives to make everyone feel supported and welcome, no matter what their income or walk of life. Through partnerships, the nonprofit can reach out farther to people in various communities and get them all the information they need so they feel they have options and choices. If you or someone you know has PD, reach out to Neuro Challenge Foundation for support on your Parkinson’s journey.

“On the days I feel sad, challenged, frustrated, or angry, I remind myself I have PD, but PD does not have me. PD does not define me. You either get bitter or you get better,” says Carolina. “It’s that simple. You either take what you’ve been dealt and allow it to make you a better person or you allow it to tear you down. The choice does not belong to fate, the choice belongs to you.”