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Last Updated:
March 27, 2018

What is Cerebral Palsy?

Dr. Lisa Thornton is a longtime AACPDM member, and currently serves on AACPDM's Board of Directors.  In this video, she gives a brief overview of cerebral palsy.


 


2017 Annual Meeting Highlights

Thursday, September 13, 2017 - Opening General Session

Unni Narayanan, MBBS, MSc, FRCS(C), the current president of AACPDM, highlighted the achievements of the Academy in the last year including the continued development of AACPDM Care Pathways; the generous support of research grants; the completion of Common Data Elements in collaboration with the National Institutes of Health and other national research organizations; the creation of the Community Council, which provides the family and consumer perspective to our Academy and will focus on research, education, and awareness; and the establishment of the International Alliance of Academies of Childhood Disability (IAACD) to further research and collaboration for the improvement of lives of children with childhood disability throughout the world.

Dr. Narayanan introduced and passed the presidency to Sarah Winter, MD. Dr. Winter is a Neurodevelopmental Pediatrician and Associate Professor in the Department of Pediatrics at the University of Utah. She introduced the theme of the 2017 AACPDM Conference of “Dare Greatly: Enter the Arena” through examples from current and historical thinkers, concluding that the achievement of true success requires an openness to vulnerability and failure.

Richard Ellenson, the CEO of the Cerebral Palsy Foundation (CPF), shared the work of the Foundation over the past year. He featured a touching spot with Wynton Marsalis and his son Tom, as part of the “Just Say Hi” campaign that encourages people of all abilities to recognize each other’s humanity. He highlighted the CPF initiatives including early detection of CP, women’s health, pain management, and accessible gaming for people with disabilities. He introduced the “CP Channel,” an app that incorporates information, videos, and expert lectures developed by the CPF.

Sue Swenson gave the Presidential Guest Lectureship entitled “Human Rights and Children with Disabilities.” Ms. Swenson is an advocate for people with disabilities, president-elect of Inclusion International, and a former acting Assistant Secretary for Special Education and Rehabilitative Services. Her presentation took us through sobering examples of the ways in which rights considered “inalienable” are alienated, with individuals with disabilities often being the first to be targeted. She encouraged the inclusion of people with disabilities in developing models of care that affect them. In her inspiring call to action, she stressed that we should strive for a social model of care that values the importance of all members of society regardless of their abilities.

Marshalyn Yeargin-Allsopp, MD received the Lifetime Achievement Award for her outstanding contributions to the field of developmental disabilities for the benefit of patients with cerebral palsy and other childhood-onset disabilities. She was the first African-American female graduate of the Emory School of Medicine. She is an internationally recognized leader in Developmental Pediatrics and Epidemiology, and was the Chief of the Developmental Disabilities Branch at the Centers of Disease Control and Prevention from 1999 to 2005.

Thursday, September 13, 2017 - Afternoon General Session

Gayle G. Arnold Lecture: John Lonstein, MD "The History of the Treatment of Neuromuscular Spine Deformities "

Cathleen Lyle Murray Award and Lecture: Jason Benetti, JD

The Cathleen Lyle Murray Foundation award recipient is selected on the basis of their impact on society through their humanitarian efforts to enhance the lives of persons with severe multiple disabilities. The award recipient demonstrates an effective and unique humanitarian approach through advocacy, legislation, clinical services, and life experiences that can be shared with the AACPDM to help promote a better understanding of and the advancement in society of persons with disabilities.

The 2017 Cathleen Lyle Murray Foundation award recipient is Jason Benetti, JD. Jason is a television sports play-by-play announcer who also has cerebral palsy. He currently does play-by-play locally in Chicago for Major League Baseball’s White Sox. He is also a play-by-play announcer nationally for ESPN, where he’s called Major League Baseball, college football, basketball, baseball and lacrosse and also the Special Olympics World Games. Because of his cerebral palsy, Jason walks with a limp and one of his eyes drifts. However, Jason understands that one trait does not define a person. His speech includes his experiences as a member of the sports media with a disability, and the situations and relationships which stem from his observations.

EACD Update by Nana Nino Tatishvili, MD, PhD, president of Georgian Association of Child Neurology and Neurosurgery and the 2018 President of the Meeting of the European Academy of Childhood Disability (EACD), which will take place in the capital of Georgia in Tbilisi, May 28-31.

AUSACPDM Update by James Rice, MD, current President/Chair of the Australasian Academy of Cerebral Palsy and Developmental Medicine (AUSACPDM), whose membership includes 400 clinicians and researchers working in the field of child disability in the Asia-Pacific region.

Friday, September 14, 2017 - Morning General Session

Dr. Meaney discussed the profound influence of maternal mental health on the development of the infant and child. Dr. Meaney and his research team have found that the level of maternal anxiety and depression, both during pregnancy and throughout the early years of a child’s life, influences the size of the infants’/children’s right amygdala and prefrontal cortex, as measured by MRI. Measuring maternal depression and anxiety using the Edinburgh Postnatal Depression Scale, they found that 29% of mothers screened fell into the subclinical depression category and 9.5% fell into the clinical depression category. This is a public health concern, and warrants recommendations for depression and anxiety screening for all mothers. Treatment options include in-person psychotherapy. At the present time, the efficacy of web-based psychotherapy has not been evaluated in this population.

Presidential Guest Lecture: Robin Ohls, MD "Protecting the Newborn Brain - Can Erythropoiesis-Stimulating Agents Improve Neurodevelopmental Outcome?"

Dr. Ohls spoke on the neuroprotective benefits and safety of erythropoiesis-stimulating agents (ESAs) in neonates, specifically erythropoietin (Epo) and darbepoetin (Darbe). In clinical studies, preterm infants were given Epo, Darbe, or a placebo. ESA concentrations correlated with cognitive scores at 2 and 4 years of age, and ESAs administered to preterm infants resulted in improved neurodevelopmental outcomes at 2, 4, and 6 years. Studies also suggest that early, high dose Epo is safe and causes no increase in mortality or major adverse events; preterm infants respond to ESAs with increased hematocrit, decreased transfusions, and decreased donor exposure; and Epo improves white matter development in preterm infants. In summary, ESAs show great promise in preventing and treating brain injury in preterm infants.

Friday, September 14, 2017 - Afternoon General Session

Dr. Marshalyn Yeargin-Allsopp discussed population- versus non-population based surveillance (or registries) to monitor cerebral palsy and developmental disabilities, and defined the different terms used in different parts of the world. While the terms may differ, the methods are similar and purposes are the same. Dr. Yeargin-Allsopp also discussed the advantages and disadvantages of ongoing population-based record review at the CDC.

Dr. Marshalyn Yeargin-Allsopp further discussed the CP Population Surveillance, as well as the Autism Developmental Disabilities Monitoring Network in the United States.

Dr. Catherine Arnaud discussed the Surveillance of CP in Europe (SCPE) and the wide range of registries (29 registries) available.

Dr. Hayley Smithers-Sheedy discussed the Australian CP Registry (ACPR), research activities on congenital CMV infection, and the development of registries in Sri Lanka, Bangladesh, and New Zealand.

Dr. Maryam Oskoui discussed the Canadian CP Registry (CCPR) and the 16 recruitment sites across Canada.

Kathleen Friel, PhD, Director of the Early Brain Injury Recovery Clinic at Burke Medical Research Institute and Assistant Professor of Neuroscience at Weill Cornell Medical College, received the Corbett Ryan Pathways.org Pioneer Award for excellence in the pursuit and achievement of quality of life while living with a personal physical challenge.

Stacey Miller, MRSc, BSc and colleagues were presented with the Fred P. Sage Award for best multimedia submission: The Child Health BC Hip Surveillance Program E-learning Module www.childhealthbc.ca/hips, which includes pre- and post-learning assessments for healthcare professionals.

Luca Patuelli, AKA “B-boy Lazylegz” was this year’s Duncan Wyeth Award Winner for his advocacy in adaptive sports. Luca was born with arthrogryposis and underwent numerous surgeries while growing up, yet he was active in soccer, football, baseball, skiing, surfing, rock climbing, swimming, diving, and skateboarding. His hip hop dance career began at age 15, and he is an advocate for ProjectRAD, a program to train dance teachers how to instruct children with disabilities. Luca’s life motto is “your first failure is not to try.”

Alicia Spittle, PhD was presented with the Gayle G. Arnold Best Free Paper Award for her paper entitled, “A Randomized Controlled Trial of an Early Preventive Care Program for Infants Born Very Preterm: The Role of Social Risk on Cognitive Outcomes throughout Early Childhood.” Dr. Spittle discussed the effects of early developmental intervention on cognitive, motor, and behavioral outcomes among preterm children, and primary caregivers’ mental health. Early intervention was associated with greater improvements in early cognition for children in families with higher social risk, while there was a greater effect on primary caregiver mental health in the lower social risk group. This work highlights the need to consider family social risk when targeting interventions.

Michael Sussman, MD, orthopaedic surgeon at Shriners Hospitals for Children in Portland, was honored with the Mentorship Award for his dedication to supporting, promoting, and mentoring young faculty, residents, and clinical research staff.

Saturday, September 15, 2017 - Closing General Session

Michael Shevell, MD, CM, FRCP, FAAN, FANA of Montreal Children’s Hospital gave the Presidential Guest Lecture: If Medicine is a Team Sport, What is the Pediatric Neurologist’s Role? Dr. Shevell spoke about the neurologist’s role in treating individuals with cerebral palsy, specifically with regards to diagnosing cerebral palsy and introducing beneficial agents during the perinatal period to reduce the clinical impacts. Dr. Shevell also discussed how medication selection for various conditions, such as seizures, may improve an individual’s functional outcome.

Derrick Chung, James Ferdinand, and Frank Gavin gave the Chambers Family Lifespan Lecture. These three parents shared their perspectives as fathers caring for children with cerebral palsy. They related their desire for providers to listen more actively, and the importance of involving fathers – not just mothers – in medical conversations.

Alex M. Pagnozzi and colleagues received the Best Scientific Poster Award for their work: “Measuring Neuroplasticity in Cerebral Palsy: What Cohort Sizes Are Needed for MR Imaging?”

Marilyn Wright and colleagues received the Best Demonstration Poster Award for their work on “Scootering for Children and Youth is More Than Fun: An Appealing Approach to Improve Function and Fitness.”

Rachel Thompson, MD was honored with the Mac Keith Press Most Promising Career Award for her work on “Hip Status and Long-Term Functional Outcomes in Myelomeningocele.”


TED Talks

Gubela Mji: How can we make disability research accessible in Africa?

Cole Galloway: A Movement for Mobility

Stella Young: I'm not your inspiration, thank you very much

Sue Austin: Deep sea diving... in a wheelchair

Lisa Thornton, MD: What I've Learned as a Childhood Disability Doctor


2016 Annual Meeting highlights

Thursday, September 22, 2016 - Opening General Session
John Ioannidis, MD, DSc - Improving Research Practice
Euan Wallace, AM - Prevention and Cure of Cerebral Palsy: A Reality or Forlorn Hope?
Lay Summary Now Available!

Thursday, September 22, 2016 - Afternoon General Session
Richard Ellenson, CEO - Cerebral Palsy Foundation Update
Donna Thomson - After 27 Years of Treatment: A Report Card on Developmental Medicine From a Consumer
Michele Shusterman - From Chaos to Cohesion: Making Sense of CP for Caregivers
Justin Herbst - Corbett Ryan Pathways Pioneer Award
Prevention and Cure of Cerebral Palsy: A Reality or Forlorn Hope?
Lay Summary Now Available!

Friday, September 23, 2016 - Morning General Session
Stephen Scherer, PhD, FRSC - Genome Analysis in Autism, Cerebral Palsy and Developmental Disorders
Maryam Oskoui, MD - Perspectives from the Canadian Cerebral Palsy Registry
Prevention and Cure of Cerebral Palsy: A Reality or Forlorn Hope?
Lay Summary Now Available!

Friday, September 23, 2016 - Afternoon General Session
Scott Wright, MD - How the Rough Beginning has Influenced the Ways that I Lead
Benjamin Joseph, MD - Agony and Ecstasy - a Personal 30 Year Journey of Management of Cerebral Palsy with Limited Resources in India
James Gage, MD - Lifetime Achievement Award
Michael Msall, MD - Mentorship Award
Annemieke Buizer, MD, PhD - EACD Update
James Rice, MD - AusACPDM Update
Prevention and Cure of Cerebral Palsy: A Reality or Forlorn Hope?
Lay Summary Now Available!

Saturday, September 24, 2016 - Closing General Session
Tom Chau, PhD, PEng - “Listen To Me, I Have Something to Say” – Enabling the Right to Communication Through Body and Brain-Machine Interfacing
Best Scientific and Demonstration Posters
Mac Keith Press Promising Career Award
Ronnie Dickson - Duncan Wyeth Award
Vedant Kulkarni, MD - Fred P. Sage Award
Prevention and Cure of Cerebral Palsy: A Reality or Forlorn Hope?
Lay Summary Now Available!

Saturday, September 24, 2016 - Community Forum
This playlist contains 11 videos, each of which highlights a different Community Forum speaker
 


NIH Workshop on Basic and Translational Research in Cerebral Palsy

In November 2014, NINDS and NICHD co-hosted a workshop on the state of the clinical science and treatment options available for individuals with cerebral palsy.  The 2014 workshop set the stage for a second complementary workshop focused on the state of cerebral palsy basic and translational research.  During the 2016 workshop, the role of non-human animal research in understanding the biology of cerebral palsy and the development of new cerebral palsy therapies will be considered.  The state of neuroprotective therapies for cerebral palsy will be discussed, as will the contribution of neuroimaging and biomarker development in furthering cerebral palsy research and drug development.  Finally, the role of interventions based on neuroplasticity will be reviewed.  Understanding the state of the science in these areas will help identify limitations in knowledge of cerebral palsy and pave the way for future discoveries needed to improve the lives of patients with cerebral palsy.