Spring 2021

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AACPDM President’s Message

Happy Spring! The cherry blossoms in Portland are blooming, indicating the arrival of spring. The board just finished the March midyear meeting virtually. It was hard to believe that a year has passed since we met in person to do the work of the Academy. As the vaccination rate in the US begins to rise and restrictions begin to slowly lift, we are looking forward to a time when we can be together in person.

While all the activities of the Academy are now virtual, this has not slowed the progress of the committees. In late November, we initiated committee chair conference calls quarterly, this has been a great opportunity to maintain communication between the committees which has facilitated many cross collaborations between various committees. You can see from some of the committee reports how the committees are working together to expand the work that they do and communicate this information to our members and those who follow AACPDM on Facebook, Instagram and Twitter.

Last year the advocacy committee presented the “Fast Track” process, a mechanism to approve advocacy issues quickly, in order to make are members and others aware of advocacy issues that they may want to support. This process has worked extremely well and we are examining ways to streamline the process even more to facilitate communication of these important issues.

The program committee for 2021, met virtually to review and finalize the presentations, posters, and mini-symposia. We were excited to see that the number of submissions was similar to previous years which allowed the committee to have a breadth of choices for their program. Notifications of acceptance have been sent out and we look forward to hearing more about the meeting as they finalize the program. We look forward to the amazing educational content that the 2021 AACPDM Planning Team has assembled for this year’s 75th Annual Meeting and the Diamond Jubilee.

Over the past year, the board has made a commitment to examining ways to address Diversity, Equity and Inclusion issues within the Academy. In addition to the work being done by the board and the program committee, we have asked each committee to examine ways in which they can develop actionable items that address these issues within the mission of each committee. We will keep you updated on the actions of the committees and the board and the ways that we are putting out commitment into action.

We are very excited that the work of the Academy continues to happen virtually and we appreciate the support of the board, EDI staff, committees and members and all those who have helped during these challenging times. As the freshness of spring is upon us, we are emerging from the challenges of the past year and looking to the sunny days ahead.

Susan Sienko, PhD
AACPDM President 2020-2021

Diamond Jubilee Plans – 75th Annual Meeting Will be Virtual!

Due to the current government mandated constraints, including travel restrictions across borders, quarantine rules associated with arrival, and current bans on large gatherings in Quebec City, the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) Board and 2021 Annual Meeting Planning Team made the difficult decision to move to a virtual only format for this fall. While the AACPDM longs to return to an in-person meeting, this is not the year. The 2021 Planning Team designed the meeting to accommodate either a hybrid or virtual format. This allowed the ability to move quickly forward with a virtual only meeting once we were notified from the Quebec City hotels and Convention Centre that they would allow rescheduling of our meeting to 2024. So, we can all look forward to Quebec City in three years!

We plan to open registration in June. Group rates were enthusiastically embraced in 2020 so those will come back for the 2021 meeting, and we will re-introduce a special early-bird registration rate again this year. We look forward to the informative and transformative presentations!

To be conducive to a virtual meeting, one of the key modifications of the meeting format this year is the introduction of Mini-Symposia to replace Breakfast Sessions and Instructional Courses. Mini-Symposia will be paired with and ‘introduce’ free paper sessions based on similar topics. Despite the new format, there will be a wealth of learning opportunities and CME/CEU’s due to the opportunity to access content after the live meeting. Additionally, the team is creating innovative and exciting ways to engage participants in fun social activities in a virtual environment particularly to celebrate our very special diamond jubilee 75th Annual Meeting.

The 2021 Program Committee specifically called for abstract submissions that directly address the topics:

• diversity, equity and inclusion
• early detection and intervention
• adapted sports and participation
• genetics in developmental disabilities
• innovation and technology

The Committee was excited about the quality and quantity of submissions. Acceptance notifications have been sent out. The 2021 Program Committee is pleased to offer a Plenary Session on Healthcare Disparity and Diversity, Equity and Inclusion. The goals are to dispel myths and better understand demographics, the most important determinants of health, and the connection between poverty, disability, and race.

The past year has been challenging for everyone; however, the AACPDM continues to be forward looking. The “teamwork” mind-set of our members solidifies a worldwide network that provides the best outcomes for patients. This team will continue to support each other through these challenging times. It was for this reason and because the meeting is being hosted in the French speaking Quebec City that the theme for this year’s AACPDM meeting is "On y Va!", a French phrase meaning "Let's Go!". It embodies how AACPDM is ready to emerge from these difficult times, together. “On y Va!” Tom Novacheck – First Vice President

Past-President Memories…

I Wasn’t Acting!

In the Spring of 2012, a special delegation was assembled by AACPDM President Joe Dutkowsky and Cynthia Frisina, Executive Director of Reaching for the Stars, a parental advocacy and educational non-profit. The group travelled to Washington, DC, and included Advocacy Committee Chair Lisa Thornton, Iowa resident and motivational speaker Michael Kutcher, and Iowa mother Kristi Trotter, and her young daughter Bella who also has cerebral palsy.

Their charge was to encourage Senate Appropriations Committee member Senator Tom Harkin and other policy makers to support Cerebral Palsy research funding. Iowa Senator Harkin had introduced the American with Disabilities Act In 1990, delivering part of a speech in sign language so his deaf brother could understand. As an influential member of the Senate Appropriations Committee, he also chaired the Senate Sub Committee on Health, Education, Labor, and Pensions. The AACPDM physician/parent coalition focused both on Senator Harkin and now retired Georgia Senator Johnny Isackson, as Frisina and Kucher were residents of Georgia.

Leading off, Lisa Thornton reminded the Senators that with proper funding AIDS had been converted from a fatal to a chronic and manageable disease within a decade. She emphasized that cerebral palsy incidence and prevalence could potentially be significantly reduced with a similar federal focus.

Michael Kutcher, the twin brother of actor Ashton Kutcher, then eloquently related his story of what it was like to grow up with cerebral palsy. Senator Harkin was obviously touched and responded that his story was so moving that perhaps he should have been the actor in the family. Michael simply responded ‘But Senator, I wasn’t acting. After a dramatic pause, Senator Harkin asked Joe Dutkowsky, whether CP and Parkinson’s disease were similar enough to be considered together in the Budget. On hearing that they involved different age groups and different etiologies, and thus required separate research approaches, Senator Harkin agreed and responded that they would include cerebral palsy in the appropriations language as a special focus. In 2014 Cynthia and Lisa followed up by providing public witness testimony before the House Appropriations Committee. In 2017, the language developed pursuant to these efforts was indeed incorporated into the Strategic Budget Plan, formally recognizing and promoting increased funding for cerebral palsy and related research.

While the audience with the Senators was brief, the advocacy process had encompassed many years extending back to 2006 with testimony from the parents of Reaching for the Stars along with AACPDM member Jan Brunstrom which then led to the establishment of National Cerebral Palsy Awareness Day (March 25th). The relationships made with key policy makers, the initiation of the AACPDM Advocacy Committee, the coordination with parent groups, CP non-profits, individual patients and professionals all came together to the betterment of patients and families with CP. Cynthia’s non-profit organization eventually merged with The Cerebral Palsy Foundation in 2019. She continues on the AACPDM Community Council, a group which she helped foster. That group was codified into our Bylaws this past year and is now a formal part of our Academy. The coalitions that goes to Washington have continued nearly yearly led by Cynthia and frequently include AACPDM members reinforcing and expanding the Washington connections. Members who have participated are: Deb Gaebler, Hank Chambers, Jerie Beth Karkos, Jane Anne Emerson, Diane Damiano, and Richard Stevenson. When it comes to advocacy, together with others, we are indeed stronger.

This article was prepared by the Historian with grateful input from Cynthia Frisina, and Joe Dutkowsky.

For more details on this momentous event please also review the Spring 2012 newsletter here: https://www.aacpdm.org/enewsletter/2016/01/

Committee Corner

Adapted Sports
The Adapted Sports and Recreation (AS&R) Committee consists of 21 members from around the world (Canada, China, New Zealand, USA). This year the AS&R Committee created three new subcommittees in addition to the five standing ones (Community Council; Community Forum; Duncan Wyeth Award; Equity & Participation; Journal Article Digest; Let’s Move! (formerly Get Up and Move!); AS&R SIG; Social Media & Awareness). To increase awareness amongst AACPDM members, our Journal Article Digest has been regularly summarizing recent literature on adaptive sports, recreation, & physical activity for people with disabilities. As a result of our collaboration with the Communications Committee, you can find these summaries on Twitter @aacpdm. We are thrilled to continue the collaboration we have established over the past few years with the Community Council. Despite the limitations the pandemic may impose on a more traditional format, we look forward to rising to the challenge and providing a memorable contribution to the Community Forum at this year’s Annual Meeting, highlighting opportunities and benefits of adapted sports and recreation for people with physical disabilities!

Advocacy Committee
The AACPDM Advocacy Committee is committed to improving awareness of relevant advocacy issues by way of the Fast Track process. We will continue to partner with organizations that share a common mission statement with the AACPDM in order to keep membership up-to-date and to build relationships with these organizations. We are working to provide updated resources to guide membership in advocating independently on topics that they find relevant through the Advocacy Toolkit on the advocacy website. We will support providers in advocating directly for patients by building a repository of references that may be useful in common clinical areas such as equipment (often denied coverage by health insurance). We also continue to support the community council both at the annual meeting as well as throughout the year.

Awards Committee
The awards committee adapted well to the virtual format for the 2020 Annual Meeting. Members were able to review the presentations and score the projects when the meeting was posted through the online platform. Award winners were notified and their selection was honored on the AACPDM social media sites. The first ever Best Adult Paper sponsored by Rady Children’s Hospital was selected at the conclusion of the 2020 annual meeting and we have been notified this will be sponsored again in 2021.

Care Pathways
Care Pathways are guidelines for the health care of individuals with childhood-onset disabilities. Their main goal is to develop recommendations that allow users to understand the evidence on a topic and apply it to clinical practice. The focus of the Care Pathways Committee in 2019-20 was on updating the process for developing an AACPDM Care Pathway utilizing GRADE (Grading of Recommendations Assessment, Development and Evaluation) methodology and with use of currently recommended tools and practices for sound reporting and conduct in development of both systematic reviews and practice recommendations. Starting in 2020 with adoption of the new methodology, practice recommendations (aka clinical practice guidelines) provided by Care Pathways are based on evidence from systematic reviews developed with rigorous methodologic standards. They are graded for their probable accuracy (i.e., quality) and the confidence with which they can be used (i.e. strength) for the purpose of making clinical decisions. The systematic processes used in the decisions and judgments involved during Care Pathways development are transparent and explicitly described. Documents describing the new process have been distributed to Pathway teams developing new or revising previous Pathways. Currently, six Care Pathways developed with the previous methodology are available; four of these are currently under revision using the new methodology. Three new pathways are in development using the new methodology. The Care Pathways website content and design is currently under review and will be revised to reflect the new methodology. View the Care Pathways documents here: https://www.aacpdm.org/publications/care-pathways

Communications Committee
The Communications Committee works to utilize coordinated strategies to disseminate Academy communications broadly and to promote its overall mission and that of each sub-committee. We use Facebook, Twitter, and Instagram as our key social media platforms and create our society newsletters. Our goal is to not only inform our members and the public of our society’s work but to also promote research, tech, disability awareness and rights, and more! Please contact us if there is something you would like to share with the world.
Facebook: https://www.facebook.com/aacpdm
Twitter: @AACPDM
Instagram: @AACPDM

Community Council
The Community Council continues to be focused on fostering relationships between patients, parents, other stakeholders and to increase awareness, education and research opportunities to improve the lives of children with CP and other childhood onset disabilities. They have enthusiastically started serving as a liaison to several AACPDM Committees. The Community Council continues to serve in an advisory capacity to the members of the AACPDM!

Complex Care Committee
The AACPDM Complex Care Committee is a robust interprofessional team that promotes academic discussion, scholarship, collaboration, and mentorship for clinicians in the care of children with medical complexity. Several members of the committee have proposed sessions related to the care of children with medical complexity to the annual meeting including a proposal for a pre-course, top publication session and complex care track to highlight relevant activities at the annual meeting. We also plan to continue to host the Complex Care SIG at the annual meeting. This year we welcomed several new members and completed a membership assessment to identify strengths and opportunities to be strategic in committee work. Both our membership and outreach and the education and training subcommittees are excited to collaborate with other AACPDM committees including the education committee for opportunities to turn prior pre-courses into sustainable educational e-courses or webinars. We look forward to creating and promoting content relevant to the care for children with medical complexity at the 2021 Annual Meeting and beyond.

Education Committee
The Education Committee is excited to welcome new members in 2021! They worked on the committee charter and updated the committee’s comprehensive goals and objectives.

The Committee conducted their first eCourse of 2/1/2021: Neuropsychological Challenges Associated with Congenital and Acquired Brain Injury by Kristine Stadskleiv, PhD, from University of Oslo. The course enjoyed a record setting 149 individuals enrolled!

Lifespan Care
One of the objectives for the Lifespan Committee is to encourage and provide leadership in developing interdisciplinary educational programs for the membership of the AACPDM on lifespan care issues including transition to adulthood, aging, and adult outcomes. The committee organized open virtual SIG Events in June, September and January with good attendance. The Committee also had significant involvement at the annual meeting. They developed a pre-conference focusing on Pain in Adults with CP, and a Lifespan Care track was available at the conference that highlighted the presentations of particular relevance to lifespan care. The Committee welcomed the initiative of a new 'Best Adult Free Paper' award at the conference. Preparatory work on identifying pain outcome measures suitable for lifespan use that will underpin a future care pathway is underway.

Research Committee
One of the objectives of the Research Committee is to invite and evaluate applications and recommend the award research grants. In 2020 the research committee reviewed 42 applications - a new record! In addition, a newly formed, NIH funded the National Pediatric Rehabilitation Resource Center (C-PROGRESS) funded 3 grants during the 2020 cycle. Pedal with Pete funded two grants during the 2020 cycle. AACPDM is extremely grateful to our partners for these opportunities!

Special Interest Group (SIGs) Specially for YOU!

AACPDM Adults and Aging SIG Meeting
The Adults and Aging SIG held their second virtual meeting of the year on March 23. Two speakers presented on Care Coordination needs in a challenging case, and Peer Support for adults with childhood onset disability. The next quarterly Adults and Aging SIG meeting will be held on Wednesday, June 23 at noon CT, and all are welcome to attend! If you would like to join the AACPD Adults and Aging SIG group, please email AdultAgingSIG@aacpdm.org with the subject “join.”

AACPDM Complex Care SIG
The AACPDM Complex Care SIG looks forward to the 75th Anniversary Annual Meeting! We hope to identify a complex care track to help attendees identify content relevant to our focus. We are also looking forward to having a complex care pre-course again this year! The 2021 pre-course will focus on care of children with medical complexity and suspected pain behaviors.

New AACPDM Grant Partnership “Sees Progress”

A key mission of the AACPDM is to promote excellence in research for the benefit of persons with cerebral palsy and childhood-onset disabilities. One way in which the Academy promotes research is through the annual Research Grants program.  In 2020 the Academy started an exciting new partnership with The National Pediatric Rehabilitation Resource Center, also known as C-PROGRESS.  C-PROGRESS helps clinical scientists studying pediatric rehabilitation by funding pilot studies, providing mentorship, and offering training and tools to support clinical trials research. C-PROGRESS stands for the Center for Pediatric Rehabilitation: Growing Research, Education, and Sharing Science, the center’s primary objective is to “see progress” in the emerging field of pediatric rehabilitation science. The Center is funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Institute of Neurological Disorders and Stroke, and the National Institute of Biomedical Imaging and Bioengineering. C-PROGRESS is one of six national centers in the Medical Rehabilitation Resource Network (MR3)

Seven pilot grants have been awarded in the 2020 grant competitions:

Immersive Virtual Reality for Eye-Hand Coordination Assessment in Children with Hemiplegia.
PI Danielle Levac, PT, PhD Northeastern University; Co-I Alexa K. Craig, MD, MS, Tufts.

Early Powered Mobility for Toddlers with Cerebral Palsy: A Comparative Case Series of the Permobil® Explorer Mini and a Modified Ride-On Car.
PI Heather A. Feldner, PT, PhD, PCS, University of Washington; Co-Is Lisa Kenyon, DPT, PhD, Grand Valley State University and Sam Logan, PhD, Oregon State University

Multi-modal Neuroimaging in Children with Hemiplegia to Assess Brain Functional Network Reorganization in Relation to Manual Response Inhibition.
PI: Yanlong Song, Ph.D. Cook Children’s Medical Center; University of Texas at Arlington; Co-Is Christos Papadelis, Ph.D., Warren Marks, M.D., Stephanie Acord, M.D., Georgios Alexandrakis, Ph.D. Cook Children’s Medical Center; University of Texas at Arlington

Teleneuromodulation in Children with Cerebral Palsy
PI: Bernadette Gillick, PhD, PT, University of Wisconsin- Madison; Co-I: Catarina Saiote, PhD, University of Wisconsin-Madison

Testing the Feasibility of a Teletherapy plus Parent Coaching Intervention for Children with Autism
PI: Roseann Schaaf, PhD, OTR/L Thomas Jefferson University; Co-I: Elizabeth Ridgway, OTD, OTR/L Albert Einstein College of Medicine and Rose F Kennedy Children’s Evaluation and Rehabilitation Center; Rachel Dumont, MS, OTR/L Thomas Jefferson University

Sensorimotor neurophysiology during locomotor learning in infants with and without cerebral palsy
PI: Laura Prosser, PT, PhD, The Children’s Hospital of Philadelphia; Yu-Han Chen, PhD, Timothy Roberts, PhD, Beth Smith, PT, PhD, Children’s Hospital of Los Angela; Thubi Hlapang-Kolobe, PT, PhD, University of Oklahoma Health Sciences Center

Babies Flying Drones: Examination of infant-robot interactions in a novel mobile kicking contingency paradigm
PI: Elena Kokkoni, PhD. University of California, Riverside; Co-I: Konstantinos Karydis, PhD, University of California, Riverside

AACPDM is grateful for the new partnership to benefit the field of pediatric and developmental medicine!

Mac Keith Press Update

Just Published! A new title in our Clinics in Developmental Medicine series, Early Detection and Early Intervention in Developmental Motor Disorders edited by Mijna Hadders-Algra.

This book provides a comprehensive overview of assessments and interventions applied in young children with or at high risk for developmental motor disorders.

• Includes evidence-based practical clinical strategies to improve care of children with or at risk of developmental motor disorders (such as cerebral palsy or developmental co-ordination disorder).
• Pays special attention to the family and environmental adaptations.
• Video-clips illustrate typical and atypical movements.
• Consistent use of the ICF as a framework.

From the Foreword
“The combination of theoretical and practical information with some really philosophical insights provide value for clinicians and for those wanting to teach and expand the evidence base in this area for the future.”

Anna Basu
Clinical Senior Lecturer and Honorary Consultant Paediatric Neurologist, Population Health Sciences Institute, Newcastle upon Tyne, UK

Readership
This evidence-based practical guidance will be useful for health professionals working in the field of early detection and early intervention including paediatricians, developmental paediatricians, neonatologists, child neurologists, paediatric physiotherapists, occupational therapists, psychologists and educationalists.

Developmental Medicine and Child Neurology

Key papers this month

Our latest pertinent Editorial considers controversies and conspiracies relating to vaccination. It asks: what have we learnt from pertussis, MMR and the Wakefield study to better prepare for COVID-19 immunisation?

Pertussis, MMR, and the COVID-19 vaccine: lessons not learned by Vijeya Ganesan

This month's Editor's Choice is this excellent study of dysarthria syndromes in children with different types of cerebral palsy. It illustrates features that may be specific to the developmental course and suggests an approach towards clinical classification.

Dysarthria syndromes in children with cerebral palsy by Schölderle et al.

Finally, hot off the press is this narrative review which explores the impact global warming and extreme weather events have on children’s mental health. It presents ominous findings that the prevalence of post-traumatic stress, depression, and anxiety is likely to increase.

Effects of extreme weather events on child mood and behavior by Barkin et al.

Video podcasts

In this podcast, Dayna Pool discusses her paper Locomotor and robotic assistive gait training for children with cerebral palsy.

Societies & meetings

EACD 2021 The theme of the next EACD meeting in May 2021 will be ‘Childhood Disability in a Changing World’. Find out more	EPNS Webinars The EPNS is hosting free monthly webinars and registration is free for both EPNS members and non-members. Find out more

Letter From the Editor

I hear many people in the US talk about a future return to “normal” life, usually meaning pre-COVID-19 activities while others acknowledge it will not likely be the same. History says major events enact permanent changes and adaptations. We know that most of our lives we have been adapting to changes around us and in our areas of interest. Moreover, we encounter non-typical children and adults daily and we know that “normal” can be difficult to define, somewhat fluid, extremely variable, and doesn’t mean “routine”. We spend time and effort to help non-typical persons adapt to their surroundings, and to adapt the surroundings to the person to continue pursuit of the six “F-words” as outlined by Rosenbaum and Gorter (2012). Which also means I wonder what this year’s second virtual meeting will be like. AACPDM will continue to adapt and enjoy the “normal” but not typical most excellent meeting. On y Va! (Let’s Go!) As always, comments, criticisms, and additional content are welcome. Steve Couch AACPDM Newsletter Editor

Click here for information on the 75th Annual Meeting.