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Author Archive for Jennifer Lyman

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!!!

Cerebral Palsy Collaborative of Western New England

On June 23, 2017 clinicians, researchers, and community agencies from Western New England gathered at the Shriners Hospitals for Children for the first annual symposium. This symposium brought together representatives from families, academic institutions, healthcare organizations, and local agencies in the area to:

  • Discuss how we currently meet the needs of individuals with cerebral palsy
  • Identify needs for clinical care, research, and education
  • Improve how we are working together

Participants were highly engaged in sharing challenges and success, networking, and brainstorming on the region’s strengths, weakness, opportunities, and threats to improving the health and wellbeing of individuals with cerebral palsy across the lifespan. The group plans to capture more information from families and individuals with cerebral palsy via a survey this fall and hold additional meetings in October of 2017 and March of 2018 to develop goals and a strategic plan.

The group is highly energized to impact local policy, service delivery, and to provide education for the empowerment of providers, families, and individuals.

The University of Hartford Institute for Translational Research and the Shriners Hospitals for Children sponsored the event.

Agenda June 23, 2017

 

Blazing New Trails

BlazeSports America (adaptive sports and recreation nonprofit organization), in collaboration with CP Collaborative member Reaching for the Stars, with sponsorship by Ipsen pharmaceuticals is hosting an educational series of “town halls” called “Blazing New Trails” for patients, families and practitioners in markets across the U.S. The Blazing New Trails Town Hall format is designed to provide families access in one place to a variety of local cerebral palsy experts – neurologists, physical therapists, occupational therapists, physiatrists, orthotists and assistive technology experts. These will be 90 minute events that will also include a family perspective. Each Town Hall will feature a multi-disciplinary panel discussion with local care team members highlighting the latest updates in overall management, physical and occupational therapies, as well as adaptive technologies. The Blazing New Trails Town Hall events will also be available on CPTV. The CP Collaborative member organizations will provide educational materials and information about the variety of services and supports available to individuals with CP and their families at each of these town town hall events!

CP Collaborative of Western New England!

Please welcome the CP Collaborative of Western New England, which will bring together, researchers, clinicians, and families to build a network to improve services and practice along the Highway 91 corridor in CT and MA. This includes Yale, CCMC, Shriners and UCP of Berkshires along with Oak Hill and others! The representative for the CPC of WNE is George Gorton, MS, CCRP. Mr. Gorton is the Director of Research, Planning, and Business Development at the Shriners Hospitals for Children at Springfield MA.

The CP Collaborative of Western New England is the result of the efforts of Mary Ganotti, PT, PhD who got support from Hartford University and Shriners Hospitals for Children to have a meeting in June of this year. Moving forward they will have at Strategic Plan and Action Items, including a web page which they will post links to CPRN, CPNOW and CP Collaborative (National) along with local research projects, providers, services, and links to fact sheets.

CP Collaborative Members CPRN and CPNOW Awarded PCORI Grant

CP Collaborative members, CP NOW and the Cerebral Palsy Research Network (CPRN) were awarded a PCORI Grant in late December to host a conference to entitled “Setting a Patient-Centered Research Agenda for Cerebral Palsy” (or Research CP for short). The conference, which will be held in Chicago in mid June 2017, is preceded by an educational webinar series on research, quality, registries and patient-centered research outcomes so that everyone at the conference has a common language.

The webinars and conference will be open to the public virtually and the in person workshop will be open to 35 people (including stipends for the community participants). The workshop will be approximately 20 people from the community and 15 people from the provider side.

Collaborative members are helping to promote this opportunity to shape a patient-centered research agenda with their constituents.

http://www.cpresearch.net/research-cp-webinar-registration/

Welcome THREE TO BE!

THREE TO BE, http://www.threetobe.org, our neighbors to the north, based out of Toronto, Canada, have joined the CP Collaborative! THREE TO BE’s mission is to advocate and raise funds to support and advance the development of innovative research, education and therapies for children with neurological disorders. We are thrilled to have them join forces with us to strengthen the unified voice for change for those impacted by cerebral palsy.

AACPDM Annual Meeting and Community Forum

Members of the CP Collaborative are preparing for the 70th Annual AACPDM meeting and Community Forum!  We are looking forward to five days of research and educational presentations with many opportunities to identify initiatives which we can work together to advance.

Additionally, many of our members have been working together with CPNOW, host of the Community Forum, to plan this full day education and support symposium for caregivers, families and individuals with CP.  This is an excellent opportunity for the community to learn about a variety of “hot” topics in CP research, learn about CP resources and find support.

http://http://www.aacpdm.org/meetings/2016/program/communityforum