Welcome to our website! At the AACPDM 71st Annual Meeting in Montreal, the participants were asked to “Dare Greatly” in their work towards the well-being of people with, and at risk for, cerebral palsy and other childhood-onset disabilities. The Academy commits to being a leader in the scientific education of health professionals who do this work. The highlight of the year is always the annual meeting but the hard working committees dare greatly throughout the year to enhance the mission of the Academy. It is our hope that this website serves to communicate the activities of this Academy as well as provide timely information on issues of interest to Academy members and those who are interested in its mission.
There are two important developments for the Academy that occurred at the annual meeting in Montreal. First, the Community Council was officially approved by the Board. This Council will be transitioning this year from the Community Council Taskforce, formed in response to a Summit held in March of 2016 to the Council in its intended form. The Community Council is now co- chaired by Wendy Sullivan and First VP of the AACPDM, Jilda Vargus-Adams. The primary purpose of the AACPDM Community Council is to provide the voice of the variety of stakeholders (community members, persons with disabilities, parents of persons with disabilities, representatives of advocacy groups, etc.) to enhance the mission of the AACPDM with the goal of creating greater opportunities to collaborate for the health, wellness and service towards those with cerebral palsy and other childhood-onset disabilities. The Chair of the Community Council will be an ex-officio member of the AACPDM Board.
The second development is the signing of the constitution of the International Alliance of Academies of Childhood Disability (IAACD). The IAACD was established to improve the health and well-being of children, youth and adults with childhood-onset disabilities around the globe by enhancing local multidisciplinary professional capacity and expertise through an international collaboration between academies. The founding Academies of the IAACD are the American Academy of Cerebral Palsy and Developmental Medicine, the Australasian Academy of Cerebral Palsy and Developmental Medicine, and the European Academy of Childhood Disability.
At this moment, I would like to point out a key development that should be of interest to both providers and key stakeholders in the United States. The Advocacy Committee has been involved for several years in an initiative to secure funding for CP research and reports the following: “While there has been much talk about what the U.S. Congress has not gotten done, the U.S. Congress has made a positive move for cerebral palsy research. The CP Collaborative (a collaboration of multiple organizations promoting and supporting individuals with cerebral palsy, including AACPDM) advocated, drafted, and lobbied for language in support of cerebral palsy research in the Labor, Health, Human Services and Education Appropriations Bill (LHHS Appropriations Bill FY2018) that passed earlier this year. Specifically, this bill has the strongest language in support of cerebral palsy research and surveillance to date. The following two paragraphs are sections in the LHHS Appropriations Bill in support of cerebral palsy research, which are directed at the CDC and NIH.
In CDC - pg. 69 of LHHS Appropriations Bill FY2018
“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 of LHHS Appropriations Bill FY2018
“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.”
This is a monumental step forward for CP research. We are looking forward to the CP community being able to capitalize on the work that is already being done at the CDC and NIH. However, more work remains. Specially, we are eager to see a strategic plan from the CDC as to how the CP surveillance will be expanded within the current resources. Furthermore, we will continue to advocate for funding to be designated for these and future CP research and surveillance efforts.”
Please familiarize yourself with the four Care Pathways that are posted on the right side of this homepage. These are useful tools for your practice, your patients and families and your trainees. Also, as you embark upon research, become familiar with the common data elements for cerebral palsy, also posted on the right side of this homepage. Not only are these useful tools for your research, but may be required elements for grant applications. Finally, I would note that the Academy leadership will be beginning a process to update our strategic plan. Look for a request for your input on the direction of our Academy in a survey of the membership in early 2018.