AACPDM First Vice President's Message
Join Us in Chicago and Become Part of a Coordinated Care Team in One Membership!
The 77th Annual Meeting Planning Team, Dr. M. Wade Shrader, MD, Dr. Bhooma R. Aravamuthan, MD, DPhil, and Dr. Theresa S. Moulton, PT, DPT, PhD, look forward to presenting an exciting Annual Meeting program full of inspiring messages, cutting edge research, and messages of hope from the amazing membership of AACPDM.
AACPDM Members can save up to $400 off Annual Meeting registration! Depending on your membership type, these savings may cover the full cost of membership! You also receive discounted rates for Preconference sessions and Networking Gala tickets.
This year we have more preconference sessions than usual. Consider these options during registration:
- A Global Perspective on Technology Use in Rehabilitation
- Transforming Your Early-Stage Research Program into an Established One
- Learning to Read and Interpret Gait Lab Kinematics and Kinetics: Testing Your Skills
- The Value of Lived Experience: Partnering with Patients & Families in Research, QI, Education, & Health
- Early Orthotic Management for Standing and Mobility in Children with Movement Limitations: Empowering Families
- Spine Deformity in Cerebral Palsy: A Comprehensive Approach
- Initiating a Research Program Focused on Cerebral Palsy or Other Child-Onset Developmental Disabilities
We are thrilled to announce the 2023 Networking Gala will be held at Chicago’s Field Museum. Join fellow participants while they “Explore the World at the Field!” Attendees will be offered the opportunity to visit numerous areas of the field museum after hours, while enjoying incredible food highlighting the “tastes of Chicago”. You will share a meal with Máximo, the largest dinosaur that ever lived, the titanosaur. The titanosaur cast will join us for the Networking Gala as guests eat and dance in the shadows of this cast that reaches 122 feet across Stanley Field Hall on our main floor and stands 28 feet tall at the head.
We hope all of you will join us at the Welcome Reception in the main exhibit hall 6:00-8:00 pm on Sunday September 10. If you are a new member, or an early career member, please join the AACPDM Membership Committee thirty minutes prior to the Welcome Reception for an informal Meet and Greet Reception.
Spend time with our sponsors in the Exhibit Hall. Our meeting brings the views of a coordinated care team in one membership to ensure the best possible health and development outcome, individuals with childhood onset disabilities. Information and ideas shared at the AACPDM Annual Meeting have exponential impacts as they will be shared at home institutions with multi-disciplinary decision makers and team members. Our membership is broad and diverse!
Winds of Hope will keep our Academy strong, and we look forward to sharing the knowledge and enthusiasm with our colleagues when we return home. See you in Chicago, September 10-13, 2023!
AACPDM Treasurer's Update
Adjusting the Financial Sails
In the words of William Arthur Ward, "The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails."
The world has seen great changes in financial pressures in the past three years. AACPDM can be classified as “adjusting our financial sails” in response to these changes. Adjusting our sails is not something new to AACPDM, but it has been some time since we have had to make these adjustments.
As we navigate through the current challenging financial times, it is crucial for us, as a membership organization, to ensure our financial soundness and embrace a culture of economic optimization. Our collective efforts are essential to maintain the stability and sustainability of our organization. To this end, our committees are continuing to engage in the great work of the Academy while weathering budget reductions. Furthermore, the Board of Director’s Mid-year Meeting was held virtually this year, cutting travel expenses. With the efforts of our members and volunteers, I am pleased to announce that our organization has maintained a strong financial position despite the economic uncertainties that have affected many other associations. This approach has allowed us to mitigate potential risks and continue providing valuable services to our members.
However, it is crucial to acknowledge that we are not immune to the challenges posed by the prevailing economic climate. As an example, due to inflation continuing above pre-pandemic trends and ongoing elevated interest rates, the costs associated with organizing and running annual meetings have gone up for all associations. We are also mindful that rising costs of nearly everything are also impacting the personal budgets of all our members. We want to thank our members for your continued commitment to the Academy by offering the largest ever member price benefit for early bird registration to the 2023 Annual Meeting! This is in addition to other benefits offered to members, including:
- free electronic access to the DMCN,
- the opportunity to apply for awards, grants and scholarships, and
- discounts on eCourses, just to name a few.
AACPDM will not compromise the quality of our services or the satisfaction of our members. On the contrary, our focus on financial soundness and fiscal responsibility will enable us to build a stronger foundation and better serve our Academy and our members in the long run.
As we continue to navigate these changing financial winds, your support and dedication to AACPDM help to fill the Academy’s sails. Chicago’s Winds of Hope are drawing us toward port in September where we will have the opportunity to find our land legs and reconnect with a robust Annual Meeting. We look forward to seeing you in Chicago and your continued engagement with the Academy!
Joline Brandenburg, MD
AACPDM Treasurer (2022-2023)
Past President's Reflection
AACPDM’s Historical Roots to Chicago
Chicago is known to many of us as the “Windy City,” the third largest city in America (after New York City and Los Angeles), the financial center of the Midwest, and, perhaps, as a flight stop-over on the way to your final destination. It was named for the wild garlic growing in the area (“Checagoua,” derived from the Native American word “shikaakwa”), as first referenced by the French fur trader Robert LaSalle in 1679. Today Chicago remains vibrant and remarkable for its educational institutions such as the University of Chicago, Northwestern, DePaul, and Loyola (there are more than 80), for its cultural landmarks.
Founding Fathers of the AACP: Seated: Temple Fay, Winthrop Phelps, Bronson Crothers. Standing: Meyer Perlstein, Earl Carlson, George Deaver.
Less known is a special connection to the AACPDM. Most members are familiar with the six Founding Fathers of the AACPDM. But the origin is more nuanced than that. Meyer A. Perlstein, a Chicago Pediatrician, was involved in the late 1940’s with the Chicago group which eventually became the Easter Seal Society. A speech pathologist with that group, Jayne Schover, head of clinical services, convinced the group to form a Cerebral Palsy Advisory Board composed, not coincidentally, of our Founding Fathers, with Meyer Perlstein organizing a meeting in 1947 at the Chicago Hotel LaSalle.
They decided to form the American Academy of Cerebral Palsy (AACP), which eventually became the AACPDM. The 1948 meeting should be considered the actual first organized annual meeting of the AACP held in Baltimore, MD, organized by President, Winthrop Phelps of Johns Hopkins. Then, several meetings in Chicago followed. The 1949 and 1950 meetings at the Palmer House, which is currently a historic Hilton Hotel and the longest continuing running hotel in the nation. It is a gem in the jewel box of Chicago architecture lore (you can tour the building -it was Potter Palmer’s gift to his wife Berta Palmer, who bought all the Monet paintings in Paris and donated them to The Art Institute of Chicago). The 1956 meeting was held on Michigan Avenue at the Congress Hotel Chicago (the same year the AACP Committee on Nomenclature worked on the Menear Classification of Cerebral Palsy).
Meyer Perlstein, one of our founders, was born in Chicago in 1902. Dr. Perlstein received a bachelor’s degree from the University of Chicago in 1923 and an MD degree from Rush Medical College in 1927. He trained in pediatric neurology and was professor of pediatrics at Northwestern University Medical School and was chief of the Children’s Neurology Service at Cook County Hospital. Each summer from 1956 through 1967, he presented a two-week course in Chicago on neuromuscular diseases of children. He was renowned for his succinct vignettes of medical information on rounds (known as “Perlstein’s pearls”). A tireless, even restless man, he spent his spare hours (i.e., after midnight) making jewelry for friends.
He was the first secretary of the Academy from 1947-1952 and the seventh AACP president in 1954. Dr. Perlstein’s pet project was the Cerebral Palsy Brain Registry, which he initiated in 1949. This was a project to correlate the clinical and pathological findings in brains of individuals with cerebral palsy. Brain specimens were forwarded to Dr. Perlstein through the Academy and then were examined free of charge by Dr. Herman Josephy, who later became a Vice President of the Academy. Dr. Perlstein’s son, Paul, who is a neonatologist at the University of Cincinnati, recollects from his childhood numerous formalin-filled containers with brain specimens residing in their family garage. The Brain Registry was supported by regular grants from the Easter Seal Society. In 1956 the Brain Registry was amalgamated with the Armed Forces Institute of Pathology under their Neuropathology Registry, and a grant from NIH was sought to complete the project but was never forthcoming. Dr. Perlstein died in 1969.
The 77th Annual Meeting returns to as close to the original Hotel LaSalle as possible. The original Hotel LaSalle, was built in the early 1900s, located at the corner of LaSalle Street and Madison Street. After a fire in 1946, hotel regulations changed, and the rebuilt hotel was finished in time for the 1947 organizing meeting, showing the “resilience” of our Academy from the very first meeting! (AACPDM Newsletter).
In the 1970s the building was converted to an office building. One of Chicago’s newest boutique luxury hotels was recently opened in the spirit of the original Hotel LaSalle, and is located a block south from the original hotel.
AACPDM is excited to return to our “roots” in Chicago and encourages each of you as members and attendees to look for new reflections during the 77th Annual Meeting!
Thank you to: Peter Blasco, Al Scherzer, William Oppenheim, Deb Gaebler, Theresa Moulton for providing research and insights on the article.
Committee and Council Corner
Adapted Sports & Recreation
Submitted by: Marianne A. Mousigian, MD (2022-23 Committee Chair)
The AACPDM Adapted Sports & Recreation Committee has continued to work hard on multiple initiatives this year! We continue to work on strategies to recruit members to our new Adapted Sports and Recreation Special Interest Group. Committee members also provide concise summaries of recent adaptive sports original research articles via the Adaptive Sports & Recreation Journal Article Digest, helping busy AACPDM members keep up with recent evidence-based literature. Our committee has also increased its focus in promoting diversity, equity, and inclusion efforts related to adaptive sports and recreation, including highlighting different organizations, resources, or events and sharing these with the AACDPM social medical outlets. Committee members are currently planning the Adapted Sports & Recreation Community Forum for the next AACDPM Annual Meeting by organizing a panel of adapted sports coaches and athletes and also teaming with Great Lakes Adapted Sports Association (GLASA) to provide an equipment demonstration. Finally, as part of our “Let’s Move” initiative, we are working to organize a morning walk/run to allow AACPDM members a fun and energizing way to network during the Annual Meeting.
Submitted by: Kelli N. Chaviano, DO (2022-23 Committee Chair)
The Education Committee has been working on several new projects. Our latest project includes the creation and presentation of the Spring Symposium, “Spring into Technology! Enabling Children in Hospitals, Schools, and Beyond” on May 3, 2023. We are so grateful for this opportunity!
The Education Committee, in collaboration with AACPDM members, continues to offer self-paced online eCourses for CME and CEU credit. We have heard your requests for conference topics for the future, and we are working to create courses for you! We are excited for our new educational platform to enhance our membership experience, including closed captioning in all our educational opportunities. If you or your committee is interested in creating an eCourse, reach out to us! You can also submit a request for creating an eCourse through the AACPDM membership portal. Click on the “home” icon and scroll down to the option for “AACPDM eCourse Submission Documents”.
We encourage all AACPDM members to take advantage of the many continuing education opportunities offered throughout the year and spread the word to colleagues.
Submitted by: Kilby Mann, MD (2022-23 Committee Chair)
The Complex Care Committee has worked to provide an annual pre-conference for the Annual Meeting. We continue to discuss how we can increase our offerings in complex care collaborating with the Education Committee. In addition, we are currently preparing for the initial meeting of the AACPDM Complex Care SIG. In line with the AACPDM, we plan to facilitate multiple meetings throughout the year, including an event in-person at the annual meeting.
Submitted by: Heidi J. Haapala, MD (2022-23 Committee Chair)
The Lifespan committee continues to work on promoting information relating to the care of adults with childhood onset disabilities. The Lifespan Journal Digest collates articles relating to lifespan care with quarterly summaries of some of the most relevant recent publications. You can find the articles on the AACPDM publications site at: https://www.aacpdm.org/publications/lifespan-journal-digest. The Adults and Aging SIG also continues to sponsor meetings relating to the care of adults. For more information regarding the meetings and to register in advance please contact the SIG at AdultAgingSIG@aacpdm.org.
Submitted by: Michael T. Healy, MD (2022-23 Committee Chair)
Conference registration time is always busy for the membership committee as memberships are renewed and colleagues become new members. In addition to reviewing these new membership applications, we are reviewing applications for the OrthoPediatrics annual meeting scholarship. Those winners will be announced later this month. Additionally, we have been working on a new initiative to support and bring value to the younger end of the membership spectrum - Early Career Professionals. This group is intended to include members still in the training phase of their career, as well as those just out of training and in the midst of building a practice or research program. This idea enjoys a broad base of support within the academy. Look for more information in the coming months, and if you are in this group, please plan to join us on Sunday evening from 5:30 – 6:00 and spend 30 minutes before the Opening Reception to network with your peers!
Submitted by: Antigone S. Papavasiliou, MD (2022-23 Committee Chair)
The International Affairs Committee (IAC) has updated its Roster and expresses gratitude to the outgoing members while welcoming the new ones. The IAC is in the process of reviewing applications for the 2023 International Scholarships, which is not an easy task due to the high number of deserving candidates who wish to attend the meeting and interact with the esteemed multidisciplinary community of the AACPDM.
Nathan Rosenberg submitted a mini-symposium titled “Making Large International Care Strides through Scholarships and Education-The Downstream Impact of AACPDM Scholarships and global activities of the International Affair Committee” on behalf of the IAC, which has been accepted for presentation at the annual meeting. The symposium will highlight the impact of the International Scholarships on the careers of the recipients and, more importantly, their contribution to the care of people with developmental disabilities around the world. The IAC is eager to share the insights gained from this work with its members.
Submitted by: Desiree B. Maltais, PT, PhD (2022-23 Committee Chair)
The Awards Committee received 33 applications for the Student Travel Award. These are presently undergoing evaluation and notifications to the candidates will be going out shortly. We would like to thank all the students who applied for this award for their involvement in the Annual Meeting. Our future does depend on you! We are also implementing a new method of evaluating papers and posters presented at the Annual Meeting for awards such as the Promising Career Award (best scientific free paper), the Best Adult Paper and the Best Scientific Poster. We thank all candidates in advance for their cooperation and for their contributions to our Annual Meeting and wish them luck on their submissions.
Submitted by: Rishi K. Agrawal, MD, MPH (2022-23 Committee Chair)
The Advocacy Committee is currently fielding a survey to the AACPDM membership about advocacy priorities. Results will then be analyzed by the committee in order to make priorities for upcoming advocacy initiatives.
Submitted by: Brittany D. Hornby, DPT (2022-23 Committee Chair)
The Communications Committee works to utilize coordinated strategies to disseminate AACPDM announcements and updates across several different platforms to promote its overall mission. We use Facebook, Twitter, and Instagram as our key social media platforms and create our society newsletters. We also work to share information about latest research and education opportunities that are of benefit to our members and the patients and families that we serve. We are in the process of reviewing applications for the Fred P. Sage Award, congratulations to our previous winners! We are collaborating with POSNA regarding a “myth buster” series and coordinating with the Community Council regarding social media posts regarding travel in anticipation of the upcoming meeting in September.
Care Pathways Council
Submitted by: Stacey D. Miller, BScPT, MRSc (2022-23 Council Chair)
The AACPDM Care Pathways Council has now been established, transitioning from the Care Pathways Committee in the fall of 2022. Thank you to all who made this important transition possible. The Council is busy developing its Charter and reviewing the methodology used to develop Care Pathways. Consistent with other professional groups, consideration is being given to having multiple methodologies. Additionally, the Council continues to support the work being done by teams to update and develop Care Pathways. We are excited to report that the Dystonia Care Pathway has undergone public comment and the release of the revised pathway is imminent. Work continues on the update of the Sialorrhea and Hip Surveillance Care Pathways as well as a new pathway on Osteoporosis in Adults with Cerebral Palsy.
Submitted by: Angela Harris (2022-23 Council Chair)
The AACPDM Community Council is busy planning for an in-person Community Forum. The Community Forum is a free educational event for individuals with cerebral palsy, and their families or caregivers, this will be held Sunday September 10th at the Shirley Ryan Ability Lab in Chicago. The Community Forum provides an opportunity to hear experts discuss issues that affect both children and adults, and learn about new research, medical advances, and topics that impact those with lived experience. Topics planned for this year will include mental health, advocacy, the benefits of participating in adapted sports and recreation, transition to adulthood and hot topics. We are also looking for new members to join the Community Council, those with lived experience can visit the AACPDM website to learn more https://www.aacpdm.org/about-us/councils/community-forum.
AACPDM SIGs – Specially Designed for You!
AACPDM Special Interest Groups (SIGs)
Submitted by: Caitlin Cassidy MD, FRCPC, AACPDM Adults and Aging SIG Chair
The Adult and Aging SIG is working hard to put together an exciting program for our next in person get together during the 2023 AACPDM Annual Meeting in Chicago. We welcome all who are interested in the transitional and/or lifelong care of people with childhood onset disabilities to consider joining us! Details about date, time, and where you can find us will all be in the final Annual Meeting program. Hope to see you there!
Adapted Sports & Recreation
The AACPDM Adapted Sports & Recreation Committee is excited to announce that we are accepting members to join our newly approved Adapted Sports & Recreation Special Interest Group (SIG). Members of this SIG will work closely with the Adapted Sports & Recreation Committee on various efforts related to adaptive sports, recreation, physical activity, and fitness. The SIG is a great way to get involved and network with others who have a passion for adaptive sports, recreation, physical activity, and fitness, but may not have the capacity to fully commit to a committee position at this time. Please register your interest using the link here: https://forms.gle/Bc2oC4JqxqzE3M1Y6 before September 10, 2023.
Mac Keith Press June 2023 Highlights
For Migraine and Headache Awareness Month, we're offering a 50% discount on the 2nd edition of Childhood Headache, edited by Ishaq Abu-Arafeh! Your society members can get a discounted copy of both the print AND digital version, at https://www.mackeith.co.uk/blog/book/childhood-headache-2nd-edition/.
Buying Book Chapters
Lots of our books are available to buy by individual chapters, including such titles as Mijna Hadders-Algra's Early Detection and Early Intervention in Developmental Motor Disorders: From Neuroscience to Participation. Your society members can get 30% off individual chapters, just as they can for our complete books, by using their society coupon code at checkout. We also offer a FREE digital copy of the introduction and first chapter for most of our titles. Your members can find more information via the Mac Keith Press books listing.
New HNNE/HINE Video
We have a new video about Hammersmith Neonatal and Infant Neurological Examinations, clearly and generously presented by one of the esteemed editors themselves, Professor Frances Cowan.
We are also pleased to announce that we now offer a discounted multi-user group access scheme – your members can find details and ask for a quote at: https://www.mackeith.co.uk/hammersmith-neurological-examinations-videos-for-groups/
A Cochrane Corner synthesizes what we know about how ADHD treatments interfere with epilepsy in children. An invited review describes state of the art research and emerging clinical practice for improving cognitive functioning in people with Down syndrome; this also includes an emphasis on the need to better identify groups of patients who are more likely to respond to some well-known therapies. A systematic mapping review looks at how service for children with disability changed during the COVID-19 pandemic and the authors suggest what we can learn for the future. An invited bioethics review of abortion in the context of fetal anomaly can inform practice, including in the context of current legal discussions on pregnancy termination. This generated responses providing perspectives from various social, political, and cultural settings. A qualitative study focusing on Phelan–McDermid syndrome questioned how parents of a child with a rare neurogenetic syndrome experience diagnosis and management. Another study on the same condition provides a careful documentation of neurodevelopmental trajectories, characterizing four stages of regression. This is followed by a work showing that preventive steroids given in extreme preterm birth improves survival and cognitive outcomes at 5 years. The Editor’s Choice is a large cohort study from Taiwan that highlights increased neurodevelopmental risk in children associated with maternal diabetes, calling for effective preventive strategies. A study of paediatric brain tumours illustrates multifaceted impacts on children and families that require continuous medical and social support. Findings from a 10-year retrospective study of children with acquired brain injury suggests that routinely collected health data can be useful in improving understanding and informing therapy in order to optimize outcomes. An open-label study of the effect of fenfluramine on hand-waving seizures in Sunflower syndrome suggests that this medication can be effective, durable, and well tolerated. A prospective video-based cohort study highlights that the severity of gait dystonia in cerebral palsy correlates with quantifiable leg adduction amplitude and variability, and a near-infrared spectroscopy study provides valuable insights into how adults with cerebral palsy use their muscles during exercise, which may lead to better training programmes.
Plus, stay up to date with the latest DMCN publications at the early view site: https://onlinelibrary.wiley.com/toc/14698749/0/0
Thank you to the AACPDM Newsletter Editor, Dr. Steve Couch!
I would like to take this opportunity to express gratitude to Dr. Couch for his dedication to the newsletter as Editor since 2017. Under his direction, we have transitioned to consistent quarterly newsletters and expanded upon our regular articles. Dr. Couch will be transitioning out of the Newsletter Editor role in the coming months. We appreciate his leadership, wisdom and insight during the transition process and are grateful for his dedication and service to AACPDM.
Lesley Pritchard, PT, PhD
AACPDM President (2022-2023)
AACPDM Newsletter Editor