On March 24th, Cerebral Palsy Foundation hosted the first ever Congressional Briefing on Cerebral Palsy, with Congressman Cohen (TN) and Congresswoman Hassan (NH), along with parent advocates, physicians, researchers and self advocates, highlighting the need for cerebral palsy research investment across the lifespan. Over 500 people attended this virtual event. With the awareness raised from this congressional briefing and with letters of support from the CP Collaborative, Congressman Cohen (TN) was able to successfully garner bi-partisan support for a new bill currently in the House of Representatives, the Cerebral Palsy Research Program Act. If passed, this act would create a cerebral palsy research program within the Centers for Disease Control and Prevention (CDC) and provide the first-ever dedicated source of federal funding for cerebral palsy research.

Watch the Congressional Briefing Here:

March 29, 2022 

WASHINGTON — Congressman Steve Cohen (TN), with bipartisan co-sponsors Congressmen Brian Fitzpatrick (PA) and Emanuel Cleaver (MO), today introduced the Cerebral Palsy Research Program Act which would create a cerebral palsy research program within the Centers for Disease Control and Prevention (CDC) and provide the first-ever dedicated source of federal funding for cerebral palsy research.

Cerebral palsy (CP) is the most common life-long physical disability, occurring in approximately one out of 345 children and approximately one million people in the United States. However, there is not a federal research program that focuses on the disability.

“The lack of dedicated federal funding has limited any potential advances into the care and treatment of cerebral palsy,” said Congressman Cohen. “Many people with CP visit pediatricians throughout their lives because there is no standard of care for treating CP and very few health care providers specialize in treating adults with CP. Few providers are even aware of how CP affects an adult.”

The Cerebral Palsy Research Program Act would direct the CDC to establish a research program to support research on the diagnosis, treatment, mitigation, health care costs, and societal costs of cerebral palsy and track the number of people diagnosed with CP in the United States. Additionally, it would provide funds to the National Institutes of Health to update and publish a Strategic Plan on Cerebral Palsy, which was last published in 2017.

“As we come to the conclusion of Cerebral Palsy Awareness Month, I’m extraordinarily proud to introduce the bipartisan Cerebral Palsy Research Program Act with my friend, Representative Cohen,” said Congressman Cleaver. “CP is the most common motor disability for American children, yet for far too long, Congress has overlooked the desperate need to fund, research and develop new treatments and technologies that can support individuals living daily with CP. With this common sense proposal, we can begin to right that wrong and take the steps necessary to improve the lives of every child living with CP — and I believe that’s something everyone in Congress should be able to support.”

“Cerebral palsy is one of the most common of all diagnosed childhood disabilities, and nearly 10,000 babies born each year will develop CP, yet, there is currently no designated federal funding for CP research,” said Representative Fitzpatrick. “I am pleased to join Representatives Cohen and Cleaver to introduce the bipartisan Cerebral Palsy Research Program Act, which will support CP research, diagnosis, and treatment efforts and improve the lives of hundreds of thousands of Americans living with CP.”

Cynthia Frisina, Cerebral Palsy Foundation Senior Vice President, mother of a daughter with cerebral palsy and the creator of National Cerebral Palsy Awareness Day, said, “The Cerebral Palsy Research Program Act will profoundly improve the lives of people with cerebral palsy and their families. The cerebral palsy community strongly supports this critical public health research need. With dedicated investment by the federal government, we will finally see breakthroughs in treatment, prevention and enhanced healthcare across the lifespan for millions of Americans.”

Read and Follow the Bill Here:

https://www.congress.gov/bill/117th-congress/house-bill/7265

The 2022 Appropriations Language Support letter has been finalized and signed by all the CP related professional and non-profit organizations. The 2022 Language is strong and is gaining momentum with key staffers on Capitol Hill.

UPDATE: As of March 11, 2022, the Appropriations language for 2022 was finalized almost entirely as requested by the CP Collaborative.

Members of the Cerebral Palsy Collaborative are advocating for the following language in the 2022 Appropriations Bill:

2022 LHHS Appropriations Bill Report Language Recommendation:

In National Center on Birth Defects, Developmental Disabilities, Disability and Health (NCBDDD):

Cerebral Palsy (CP) is the most common, lifelong motor disability caused by an early developmental brain injury. The mechanism of injury underlying CP is still not well-understood; therefore, the Committee encourages NCBDDD to explore cross-divisional funding opportunities, networks, data sets and systems to accelerate data-driven public health research to improve CP surveillance and develop better understanding of the mechanisms leading to earlier diagnosis and better outcomes to reduce the public health burden of CP.  Private partnerships in select US NICU’s representing 10% of high-risk infants have reduced the age of cerebral palsy diagnosis from 19.5 months to 9.5 months by creating rigorous training and systems approach. Additionally, these methodologies have been utilized by CDC in other countries in response to the Zika virus. Therefore, the Committee requests $5,000,000 for additional US high risk infant follow up sites to reduce the age of cerebral palsy detection and diagnosis, as well as the addition of cerebral palsy to the existing surveillance sites across the Autism and Developmental Disabilities Monitoring (ADDM) network. Additionally, the committee encourages the CDC to conduct an updated study from the 2003 report on the healthcare and societal costs of CP in the US.

In National Institute of Neurological Disorders and Stroke (NINDS):

The Committee commends NIH (NINDS & NICHD) for supporting research on mechanisms leading to Cerebral Palsy, health outcomes for those affected, biomarkers that may aid in diagnosis or treatment selection, and interventions for treatment and prevention of Cerebral Palsy. The Committee strongly encourages NIH to prioritize and establish a dedicated Cerebral Palsy Funding Opportunity Announcement (FOA) to significantly strengthen, accelerate, and coordinate Cerebral Palsy research priorities across the lifespan identified in the 2017 NINDS/NICHD Strategic Plan for Cerebral Palsy research. This Cerebral Palsy FOA should target basic and translational discoveries, including neuroprotective, regenerative medicine and mechanisms of neuroplasticity, as well as implementation and clinical studies aimed at early detection and intervention, comparative effectiveness and functional outcomes. 2021 will be five years since the last Cerebral Palsy Strategic Planning workshop, therefore the Committee encourages that a follow-up workshop be held in 2022 in conjunction with key stakeholders. The purpose of this workshop will be to provide updates on promising research performed to date with the goal to further refine the specific opportunities that were identified in the 5-year NIH strategic plan including early detection and intervention. NICHD is also encouraged to consider a neuroplasticity workshop and research opportunities focusing on the motor and health benefits of physical activity for patients with cerebral palsy through the lifespan.

The Cerebral Palsy Foundation (CPF), a sixty-year old foundation based in New York City and a leading voice in the world of Cerebral Palsy and disabilities, announced today that Reaching for the Stars, A Foundation of Hope for Children with Cerebral Palsy (RFTS), one of the largest parent-led global CP nonprofits, will become part of CPF.
The merger of these two leading organizations in the field of cerebral palsy and disability will leverage the organizations’ unique strengths and complementary capabilities to advance the field in new and innovative ways.

Cynthia Frisina, Executive Director and Co-Founder of Reaching for the Stars, an educator, and leader in the field, will join CPF as Vice President of Partnerships, managing the foundation’s growing national and global footprint, as well as its grants portfolio. The RFTS executive board – Wendy Sullivan, Michael Kutcher, Brad Searle and Dr. Lisa Thornton – will also become part of the CPF family, becoming members of a newly formed Advisory Circle, tasked with informing and evolving CPF’s many efforts

Said Cynthia Frisina, “Bringing together Reaching for the Stars and the Cerebral Palsy Foundation is an exciting move forward in connecting our shared capabilities and advancing progress for the entire field. Our unified vision of transforming lives for people with cerebral palsy through research, innovation, and collaboration will create new opportunities and significant near-term impact.”

CPF’s key initiatives focus on improving early detection of CP, improving inclusion in schools, and developing technology platforms which offer a wide range of resources to help people with CP and their families better manage challenges and issues. CPF also provides a robust stream of social media content to help change the way we all look at disability. To date, the Foundation’s video resources have generated over 75 million views.

The Foundation’s work informs, connects, and empowers people with cerebral palsy and related disabilities and their families. Reaching for the Stars, with their strong family-centric focus and advocacy leadership, will add a huge multiplier to these efforts.

The new entity will retain the name the Cerebral Palsy Foundation.

CPRN and CP NOW are launching Research CP Dystonia Edition to capture a more focused agenda for people who have dystonia in CP. This mixed type of CP often goes undiagnosed, causes pain, inhibits function and confounds many interventions. The initiative starts with an opening webinar on October 16th. Just learning the definitions will be invaluable to many community members! We have a great leadership and presentation team that includes Darcy Fehlings, MD, Michael Kruer, MD and Bhooma Aravamuthan, MD, DPhil. register at https://mycp.org/joinMyCP/?referrer=researchcp

The American Academy for Cerebral Palsy and Developmental Medicine annual community forum will be held in Anaheim, CA, on Sept. 21 and it is shaping up to be an fantastic program filled with international experts on the topics of Regenerative Medicine, Genetics, Vision, Transition, Advocacy, and a panel with demonstrations of Adaptive Sports and Recreation! We are looking forward to having individuals with CP, their loved ones and caregivers attend this free event. http://www.aacpdm.org/meetings/2019/community-forum

The Cerebral Palsy Research Network (CPRN) has launched its community web portal called MyCerebralPalsy.org (MyCP). MyCP is a destination where members of the community with cerebral palsy (CP) – both people with CP and their caregivers – along with advocates, researchers and clinicians, can engage in discussions about research and participate in surveys. MyCP will provide access to three primary services:

1. the CPRN Community Registry – a database of people with CP confidentially and privately sharing information about their condition with researchers through surveys;
2. the MyCP forum – a place for discussions among community members, clinicians and advocates about CP research;
3. Research News – a blog about groundbreaking studies, new evidence from research and research in progress with CPRN.

The CPRN Community Registry allows members of the community to participate in confidential surveys about their experience with CP. This information is used by CPRN researchers to understand the natural history of CP to generate new knowledge for future research and enhancements to services for people with CP. It also allows CPRN to find members of the community who want to participate in clinical trials or other studies. All information gathered in the CPRN Community Registry is stored securely at the University of Utah under the guidance of the University of Utah ethics board (institutional review board).

The MyCP forum provides member to member discussions about important research topics such as “what is the most pressing thing to study in CP?” MyCP members includes people in the community with CP, their caregivers, advocates, clinicians and researchers. All identities are protected and the discussions are not accessible by non-members or search engines. MyCP discussions help direct the course of research at CPRN.

Participants can use the link below:

Join My Cerebral Palsy

Reaching for the Stars and Cerebral Palsy Foundation representatives met with key players on Capital Hill on March 25, 2019, National Cerebral Palsy Awareness Day, to discuss recommendations to the 2020 Senate Appropriations Bill Language regarding Cerebral Palsy research and surveillance at the NIH and CDC. We are all enthusiastic about the relationships that RFTS has cultivated over the years and the CP Collaborative membership is honored to be able to provide our support to this effort. This year, the CP Collaborative signed on to the language recommendations below:

2020 LHHS Appropriations Bill Report Language Recommendation:

In National Center on Birth Defects, Developmental Disabilities, Disability and Health:

Cerebral Palsy (CP) –Cerebral Palsy is the most common, lifelong motor disability caused by an early developmental brain injury. The mechanism of injury underlying CP is still not well understood, therefore the Committee encourages NCBDDD to use existing resources, networks, data sets and systems in infant health to improve CP surveillance and develop better understanding of the mechanisms leading to earlier diagnosis and better outcomes. While the Hammersmith Infant Neurological Exam (HINE) for early detection of cerebral palsy hasbeen developed and is being utilized by the CDC in other countries in response to the Zika virus, the standardized tools used for early detection are not being widely utilized in the US, and few providers are using these as standard of care. The Committee requests that CDC share early detection guidelines with pediatric providers and develop a US implementation plan. The Committee requests in the fiscal year 2021 CJ report on the cause, earlier diagnosis and treatment of CP across the lifespan.

In National Institute of Neurological Disorders and Stroke (NINDS):

Cerebral Palsy (CP) – The Committee commends NIH (NINDS) for implementing Funding Opportunity Announcements (FOAs) for clinical research supporting observational studies that are well suited for the study of Cerebral Palsy (CP). The Committee strongly encourages NIH to prioritize and implement additional FOA’s to significantly strengthen, accelerate, and coordinate cerebral palsy research priorities across the lifespan identified in the five-year CP Strategic Plan.  FOAs should target basic and translational discoveries, including genetics, regenerative medicine and mechanisms of neuroplasticity, as well asclinical studies aimed at early intervention, comparative effectiveness and functional outcomes in adults. The Committee also encourages, in conjunction with key stakeholders, that a follow-up workshop be held to further refine the specific opportunities that were identified in the NIH strategic planwith the objective of establishing CP-specific funding opportunities to address identified gaps. NICHD is also encouraged to coordinate with other agencies, including CDC, to support additional research on preventing, diagnosing and treating Cerebral Palsy.

2020 Appropriations Letter_Final 3.25