Championing Change: The History of the Cerebral Palsy Foundation

For 70 years the Cerebral Palsy Foundation has grown into the largest non-government funder of cerebral palsy research in the United States, Ireland and in many parts of the world. This has been achieved through the work of renowned thinkers in science, research and medicine. But it was first imagined by dedicated, visionary parents who wanted to make a difference.

People with cerebral palsy have rarely received the interventions and supports they need at the moments they need them. The Cerebral Palsy Foundation is changing that around the world.

1949

In 1949, Isabelle Weinstein Goldenson and her husband Leonard, then President of the United Paramount Theatres and ABC Television, began to seek treatment for their daughter who had a recent diagnosis of cerebral palsy.

They soon realized few specialists existed. Shocked by the lack of affordable and accessible quality care for individuals with cerebral palsy, the Goldenson’s decided to take action.

1950s

In 1950 Leonard and Isabelle launched the first regular telethon in the United States, in aid of United Cerebral Palsy. This helped telethons become both regular a regular feature of television internationally and an impactful way to raise funds for charities.

In 1955, Isabelle Goldenson convinced Dr. Sidney Farber at Harvard Medical School of the need for research into the prevention of cerebral palsy. Dr. Farber brought in fourteen of the top medical scientists from across the country, including Dr. Houston Merritt, Dean of Columbia’s Medical School, and members of the National Institutes of Health (NIH), to form the United Cerebral Palsy Research and Educational Foundation.

1969

In 1969, research funded by the foundation isolated the rubella virus and subsequently developed a vaccine for German measles, one of the leading causes of CP at the time. Over the years, we have worked with groups on everything from improving therapeutic techniques to gaining new understandings of the brain and its functions.

When we began, the mission of the foundation was to fund the work of young investigators so they could build a body of work that would yield NIH research grants, thereby growing the number of people studying CP. As such, we focused primarily on basic science and the eventual development of new medical researchers and novel approaches. However, so much has changed since that time.

1980s & 1990s

In the 1980s and 1990s CPF funded medical breakthroughs and funded a variety of research important to the cure, prevention, and treatment of cerebral palsy.

In the 1980s and 1990s the foundation developed a pump for reducing disabling spasticity (tightness/stiffness of muscles) in people living with cerebral palsy, and established one of the first gait analysis laboratories in the country.

2006

National Cerebral Palsy Awareness Month is established by parents, in efforts lead by Cynthia Frisina and her foundation Reaching for the Stars (RFTS). A Foundation of Hope for Children with Cerebral Palsy.

RFTS quickly grew into one of the largest parent-led foundations of its kind, and now National Cerebral Palsy Awareness Day is celebrated in many cities across the United States as well as all over the world thanks to the internet.

2010s

In the 2010s, the Foundation expanded a research portfolio that funded a variety of projects.

This research agenda included pilot studies, basic, clinical, and applied research. These funded projects included deep brain stimulation research in development of a prototype adaptation of Microsoft Kinect Gameware, and the use of robotics in the treatment of spastic cerebral palsy. CPF funded research using robotics to help Middle East children and adolescents with CP navigate walking. The foundation funded high risk, high gain exploratory projects focusing on neural correlations of intensive voice treatment effects on children with CP, sequencing CP candidate genes, using robotic assistance to improve gait in children with CP, and the application of non-invasive brain stimulation.

2017

In 2017, the Foundation fostered growth through large-scale targeted programming, launching both the Early Detection & Intervention Network and Just Say Hi!

The Early Detection & Intervention network represents a collaborative, multifaceted endeavor to redefine the trajectory of cerebral palsy. By leveraging advanced assessments, technology, and global partnerships, this program works to positively transform the lives of millions impacted by cerebral palsy, advocating for enhanced support and universal access to effective interventions.

Cerebral Palsy Foundation’s (CPF) Early Detection and Intervention Network has been instrumental in advancing early diagnosis and intervention strategies for cerebral palsy.

“Just Say Hi!” is an award-winning PK-12 schoolwide disability inclusion curriculum and program created by the Cerebral Palsy Foundation. Just Say Hi provides schools with an intentional, evidence-based pathway toward disability inclusion that fosters learning in a welcoming environment.

2019

In 2019, the Foundation entered a new era of growth and transformation under the steady leadership of Executive Director, Rachel Byrne. Rachel is a visionary and tenacious leader in the disability nonprofit space, whose work continues to propel CPF forward.

This same year, CPF merged with Reaching for the Stars: A Foundation of Hope for Children with Cerebral Palsy and its founder, Cynthia Frisina, brought to the foundation her expertise in strategic advocacy for cerebral palsy research funding.

2023

Our work, through the Early Detection & Intervention Network, lowers the average age of a cerebral palsy diagnosis from 2.5 years to less than a year.

This is the first successful implementation of international guidelines for early diagnosis of CP across a clinical network of US institutions. We implemented a process that lowered the age of diagnosis below 12 months, and achieved this goal in only 12 months, through careful adherence to CP diagnosis criteria.

The success of the implementation process encouraged state collaboratives and other large state institutions to join the network or learn from its challenges.

Today

Today, we are at the forefront of the diverse and significant research being pursued. And yet, amid new thinking, research, clinical application, and knowledge transfer which can change lives, healthcare is too often delivered incompletely, or not to the needed standard across the lifespan. As such, there are just too many clinics and families who don’t benefit from the advances and treatment improvements that are being made.

The Cerebral Palsy Foundation promotes the delivery of current research, best practices, and technology to people with cerebral palsy and their support systems – from researchers, to clinicians to friends and family.

Our mission of transforming lives through research, innovation and collaboration is changing the future for people with cerebral palsy through our collaborative networks consisting of the world’s most prestigious research institutions, clinicians and innovators from a variety of disciplines.

As we look to the future, we commit to building on the legacy of our past including luminaries such as Paul A.Volcker, former Chairman of the Board of Governors for the Federal Reserve System, Dr. Murray Goldstein, former Assistant Surgeon General. And of course, we continue to build on the vision of our Founders, the Goldensons and Hausmans – who brought this Foundation into existence to not only spur on research, but to make sure our community could benefit from it.

Together, the Cerebral Palsy Foundation continues to build on a legacy working together to make important strides for the CP community. Our Team and Board continue to honor that legacy by trying to make a difference for others and change lives.