Dunay to Help Lead Cerebral Palsy Research Foundation

Lizette Dunay has been named Chairman of the Board by the Cerebral Palsy Alliance Research Foundation (CPARF).

With more than 23 years of involvement in the cerebral palsy community and over a decade of dedicated service to CPARF, Dunay brings unmatched passion and a deeply personal connection to the organization’s mission. CPARF is the foremost nonprofit in the world dedicated to research and innovation for people with cerebral palsy. Guided by a five-member scientific advisory board, the foundation funds science that addresses every age and stage of life, providing crucial insights for people with cerebral palsy, their families, and their care teams.

“The work of raising awareness and funding for any medical research is at its core — people powered. To have a person like Lizette at the helm of the foundation’s board is an exciting moment for CPARF. Over the last two decades and alongside her family, Lizette has invested so much of herself into fighting for increased funding and visibility for cerebral palsy research. With her experience and support, our vision for a more inclusive and accessible world is taking yet another vital step forward,” said Chris Olver, executive director of CPARF.

Dunay’s advocacy journey began after the birth of her son, Alex, when doctors discovered he had experienced a hemorrhagic stroke shortly after birth. This diagnosis led Dunay to a path she had not expected, but one to which she has remain steadfastly committed for almost 25 years. Today, Alex, now 23, leads an active and vibrant life participating in Habima Theater productions, riding his bike, playing video games, and spending time with his beloved golden doodle. He attends school in Atlanta and has a passion for animals, embodying a positive, “can do” attitude, just like his mother.

Now, as Dunay steps into her new leadership role at CPARF, she recognizes the broader challenges ahead. At a time when healthcare research funding faces significant hurdles, she is determined to increase donor engagement.

“I want to create greater awareness of all CPARF programs, including funding for research and the many initiatives that improve the quality of life for people with cerebral palsy. To get there, we need to expand our donor base to those who may not be familiar with all the work and advancements being made by CPARF. Our goal is to raise $2.5 million over the next 12 months, beginning with the launch of this year’s STEPtember, our annual fundraiser,” said Dunay.

STEPtember is the organization’s largest fundraiser and brings together participants from across the globe to support groundbreaking research and assistive technology for people with disabilities. Every day during the month of September, participants commit to taking 10,000 steps — or the equivalent through nearly 90 different activities, from dancing and swimming to gardening and adaptive sports, all the while raising funds from supporters. This year’s event promises to be the most dynamic yet, marking a major fundraising push toward Dunay’s ambitious goal.

Cerebral palsy is the most common childhood-onset physical disability in the world, affecting 18 million people globally and approximately 1 in 345 births in the United States each year. Caused by brain injury during pregnancy, birth, or shortly after birth, CP affects movement, coordination, muscle tone, reflexes, posture, and balance. It is highly complex, presenting differently in every person, with many people also experiencing co-occurring conditions such as chronic pain, intellectual disability, impaired vision or difficulty walking.

Recognizing this complexity, CPARF addresses the needs of the community through a three-pronged approach: research, innovation, and collaboration. On the research front, the foundation currently funds nearly 30 multi-year studies and two fellowships for early career researchers, ensuring that scientific progress spans the full lifespan from infancy through adulthood.

Through its innovation program, Remarkable US, CPARF accelerates assistive technology that breaks down barriers to independence. To date, the initiative has provided funding to 13 startups, served more than 100,000 people in nine countries, and built a pipeline of transformative solutions for the disability community.

Collaboration is the third pillar and includes partnerships with a number of organizations, most notably with the Cerebral Palsy Research Network (CPRN), which involves top-tier institutions such as Mayo Clinic and Johns Hopkins. This initiative has created the first national cerebral palsy patient registry. Currently, through the cooperative effort, an adult toolkit is being developed and will cover topics such as employment, travel, muscle and bone health, self-advocacy, and pain management.

CPARF is adding two board positions this year. Interested individuals may send an email to Chris Olver at chris.olver@cparf.org. Those who would like to register to be a part of the STEPtember event or donate may visit steptember.us.