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2022 Cerebral Palsy Appropriations Language Request

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.

Reaching for The Stars, A Foundation of Hope for Children with Cerebral Palsy, Merges with the Cerebral Palsy Foundation Powerful New Entity Will Increase Impact In The CP Community

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.

Research CP Dystonia Edition

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

AACPDM Community Forum

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

MyCerebralPalsy.org (MyCP) officially launches!

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

Advocacy Update

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

2018 UCP National Annual Meeting

CP Collaborative Members served on a panel at the 2018 UCP National Annual meeting in St. Louis, MO on April 29th, 2018. The purpose of the panel was to inform the national UCP affiliates of the resources, services and activities of the various cerebral palsy related organizations and give guidance as to how we as a community can better collaborate.

Anita Porco, VP of the UCP Affiliate Network, served as the moderator for the panel.

Terry Such-Neibar, M.D., Chair of the Advocacy Council of the AACPDM spoke about the variety of resources available to UCP affiliates and their clients through the AACPDM.

Richard Ellenson, CEO of CPF spoke about opportunities for collaboration with UCP affiliates and a variety of initiatives that CPF is spearheading to promote awareness, participation, education, health and wellness of those with CP.

Jennifer Lyman, Coordinator of the CP Collaborative spoke about all of the remaining CP Collaborative member organizations and their various resources and initiatives, as well advocacy for the CP community. Jennifer also spoke on behalf of Paul Gross, Chairman of CPRN and presented the organizational structure, background, research initiatives and ways CPRN envisions UCP affiliates and CPRN can collaborate.

We are grateful to have UCP as a member of the CP Collaborative and look forward continued efforts for this community to work together for the benefit of all those who are impacted by cerebral palsy!

 

 

S.Res.446 – 115th Congress (2017-2018): A resolution designating March 25, 2018, as “National Cerebral Palsy Awareness Day”. | Congress.gov | Library of Congress

CP Collaborative member group Reaching for the Stars has once again ensured that March 25th is designated as National Cerebral Palsy Awareness Day. The Collaborative wishes to thank RFTS and Senator Isakson (R) of Georgia, sponsor of this resolution, for their efforts on behalf of the entire cerebral palsy community.

https://www.congress.gov/bill/115th-congress/senate-resolution/446?r=1

CP Collaborative of Western New England: Update, Executive Summary and Events

Cerebral Palsy Collaborative of Western New England

Mission: To bring together professionals and individuals in the local region interested in improving health and quality of life of individuals with cerebral palsy.

We had our first collaborative meeting was on June 23 2017 at Shriners Hospital for Children, Springfield Massachusetts. Clinicians and researchers concerned with the health and wellbeing of children and adults with CP in the Western New England area discussed strengths, weaknesses, opportunities, and threats to providing optimal care. It was decided that for our next meeting we will invite more families and adults with CP to hear their perspectives and decide upon goals and actions. Executive summary of the meeting can be found here.

Our first step after the meeting was to gather information about resources available for community fitness for individuals with disabilities. See listings gathered to date here.

The National Center for Health, Physical Activity, and Disability (NCHPAD) maintains directories of programs, orgranizations, equipment vendors and more organized by state at:

https://www.nchpad.org/Directories

We encourage facilities and programs in Western New England that provide services to individuals with CP to register with NCHPAD at: https://www.nchpad.org/requestForm/Programs

Our next meeting is June 8, 2018!

The plan is to hear from families and consumers their issues and concerns and formulate a strategic plans and actions to further our mission.

We plan on a movie night “Including Samuel” in April at Shriners Hospitals, Contact Mary Gannotti Gannotti@hartford.edu if you are interested in showing it your hospital or organization. 

Adaptive Physical Activity Opportunities 1 25 2018

Exective Summary Aug 16 2017

2018 Appropriations Language Approved!

The 2018 LHHS Appropriations Bill has been approved and published. We are glad that this bill has the strongest language in support for Cerebral Palsy research and surveillance to date and are looking forward for the CP community being able to capitalize on the work that is already being done at the CDC and NIH.
We were able to get everything in the bill that we asked for except the 5 year strategic plan at the CDC. We will be following up this week to gain further feedback on understanding how we can better move forward with the CDC.
The language at the NIH is strong and can help the CP Community of researchers and patient advocacy groups work collaboratively to gain more grants for research opportunities.  I would love for this group to talk about some priorities and a plan to move forward in working to pull through these opportunities at the NINDS / NICHD.
In CDC – pg. 69

Cerebral Palsy [CP].—The Committee encourages CDC to build upon existing surveillance and research applications of CP surveillance within the established 11 Autism and Developmental Disabilities Monitoring Network surveillance sites. The Committee recognizes and supports CDC’s efforts to include CP surveillance in three existing sites and encourage CDC to expand this effort within current resources to additional sites allowing for a more nationally representative sample.

In NINDS – pg. 91
Cerebral Palsy [CP].—The Committee commends NINDS for developing the CP 5-year Strategic Plan and urges NINDS to implement Funding Opportunity Announcements in support of the top priorities and increase its CP research efforts for prevention, treatment, and cure through the lifespan. The Committee encourages funding for basic and translational research (including regenerative medicine) for improved outcomes for patients with CP, and recommends collaboration with the research and advocacy community. Furthermore, the Committee recommends that NIH form a transNIH working group of program officers who manage their Institute’s CP portfolio and that this group regularly interact with CP patient advocacy groups.
More to come!!!