Council Updates

AACPDM SIGs Highlights

Elements of Data from NINDS

Mac Keith Press March 2024 Highlights

Letter from the Editor

Spring 2024

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AACPDM President’s Message

Dear AACPDM Members,

Spring has sprung across most of the country now. In addition to the topic of the weather, our early April Academy business calls experienced a reoccurring theme regarding the eclipse. I hope wherever you are that you are able to enjoy the change of the season with you and yours.

It has been a busy spring for AACPDM leadership as we continue to drive forward. The AACPDM Executive Committee met in Milwaukee in early March for a strategic leadership meeting focusing on various areas of Academy business and needs. We are always thrilled that the timing aligns with CP Awareness Month! For several weeks following the Milwaukee meeting, the entire AACPDM board participated in numerous Zoom calls to review the important work of the committees. I encourage you to check out the “Committee Corner” section of this newsletter for news and updates. We are also pleased with the work of our SIGs. AACPDM now has four formal SIGs. The past quarter we welcomed the first sessions hosted by the Adapted Sports & Recreation SIG and the Technology SIG. If you would like to learn more about the SIGs, please visit our website here.

We are thrilled to announce the second annual Spring Symposium, to be held on April 30 entitled, "Modernizing Education for the Next Generation – Tips for Creating an Engaging and Dynamic Educational Experience." The goal of the 2024 Spring Symposium is to provide an audience of interdisciplinary health professions educators with the attitudes, knowledge, and skills required to engage, motivate, and challenge adult learners regardless of profession or specialty.

AACPDM continues to expand member benefits and engagement. We are excited to announce a May webinar for early career members that will focus on how to maximize your productivity with AACPDM resources. Additionally, as an AACPDM member, you will notice special email announcements on the last Friday of the month that highlights open job positions from the AACPDM Job Posts.

It continues to be an honor to serve as President to this Academy that I call my professional home. One of the main reasons for membership that is continually highlighted as a benefit of the AACPDM is the ability to work across disciplinary fields, and the close working relationship with members from across North America and around the world. Please invite your friends and colleagues to join the AACPDM. They will truly experience an organization like no other professional society!

Sincerely ,

M. Wade Shrader, MD

M. Wade Shrader, MD
AACPDM President (2023-24)

Did you know:
Quebec City is the only walled city in either the US or Canada? It has 4.6 kilometres of walls! They were primarily built for defensive purposes by the French in the 17th and 18th centuries. You can join other AACPDM Annual Meeting Attendees at the famous Québec City Armoury for a night of dinner and dancing with the annual Networking Gala! Registration opens in May.

Quebec

As a reminder, AACPDM Members will save up on Annual Meeting registration, Preconference Sessions and Networking Gala tickets.

Greetings from Quebec

AACPDM First Vice President's Update

Bonjour! Abstract submission notifications have been sent for the 78th AACPDM annual meeting to be held in beautiful Quebec City October 23-26, 2024! We are excited about the options that will be available at the meeting. This year we had a record-breaking number of 640 submissions for podium presentations, scientific posters, demonstration posters, clinical observation/single case study posters, morning sessions, mini-symposia and pre-conference courses. We were impressed by the quality of the submissions and inspired by the diversity of the content.

The dedication of the 34 members of our Scientific Program Committee has been remarkable. Each abstract is evaluated by three reviewers. The entire process involved over 1,920 reviews and two full days of concentrated review by our planning team. We are grateful to all who participated in the process.

We are also pleased with the conference venue and the options for social events Quebec offers. The conference center is spacious and will allow us to spread out. It is connected to both of our hotel options. All of it is very close to the stone ramparts surrounding Old Quebec (Vieux Quebec), a UNESCO World Heritage site.

“Translating Discovery” is the theme for the meeting. AACPDM members are deeply committed to research, quality improvement, and advocacy in the care of individuals with childhood onset disability. Our annual meetings celebrate this shared passion with presentations of our latest work. This year we want to place special emphasis on the journey of discovery - from the bench through to implementation into everyday clinical practice. Please look for the meeting registration notification in May and stay tuned for more information about what we have planned!

We can't wait to see you in October when, together, we will enjoy the amazing city of Quebec while we savor outstanding food, friendship, and, most of all, the opportunity to learn from one another.

Laurie Glader, MD

Laurie Glader, MD
AACPDM 1st Vice President (2023-24)

Dr. Martin Bax

Dr. Martin Bax, Courtesy of Mac Keith Press (https://www.mackeith.co.uk/about-us/our-history/)

"Martin Bax will always be the dapper man with the carnation in his lapel, always a gentleman, he was amusing, impish, and a delight!"

-Deborah J. Gaebler-Spira, MD – AACPDM Past President (2010)

Past President’s Reflection

AACPDM Remembers Dr. Martin Bax

AACPDM is saddened to hear of the recent passing of Dr. Martin Bax, co-founder of the Clinics in Developmental Medicine (CDM) series at Mac Keith Press, and long-standing Senior Editor-in-Chief of the Developmental Medicine & Child Neurology (DMCN).

Dr. Bax was instrumental in the advancement and development of the DMCN as we know it today. Because of his diplomatic efforts, in 1990 the DMCN increased its publication from 6 to 12 issues per year and became the official journal of the American Academy for Cerebral Palsy and Developmental Medicine and Child Neurology, and the British Paediatric Neurology Association. The DMCN also developed close ties with the European Academy of Child Disability, where Dr. Bax was Chairperson from 2000 to 2008.

During his time as Senior Editor, he established Mac Keith Meetings, Mac Keith Press workshops, and Mac Keith lectures. He retired as Senior Editor in 2003. The Collected Editorials by Martin C O Bax from Developmental Medicine & Child Neurology 1961–2003 was published by Mac Keith Press in 2004. Dr. Bax was Life President of the Society for the Study of Behavioural Phenotypes.

Dr.Bax has been a major contributor to the first three editions of Diseases of the Nervous System, edited by Jean Aicardi. He was also co-editor with Ian Crocker of The Placenta and Neurodisability, 2nd Edition (2015). Both books are part of the Clinics in Developmental Medicine series, published by Mac Keith Press.

Reference: https://www.mackeith.co.uk/about-us/our-history/

Thank you to several of the Past AACPDM Presidents who have provided personal reflections regarding Dr. Martin Bax.

Peter Rosenbaum, MD - AACPDM Past President (1997, 1998)

Dr. Martin Bax, 1933-2024 - A Personal Reflection

The world of childhood disability – indeed the entire world – has lost a very special man. Our Academy will have known Martin as the longstanding editor of our journal (Developmental Medicine and Child Neurology), and a man who attended and presented at Annual Meetings beginning in the late 1960s. He contributing in myriad ways to our personal development – whether we were aware of that or not! – and to the field of childhood disability, to our understanding of who we were and what we were striving to do. Having travelled the world professionally as well as for personal learning, Martin always saw the ‘big picture’ and could relate this or that ‘new’ idea to people, places and times gone by. He connected the dots incredibly well, but never let his erudition swell his head or make others feel less that they were. Part of the mystique of Martin was the bridging role he played between the revered clinical ‘fathers’ (and occasional ‘mothers’) of the field of childhood disability in the late 1950s, and the emerging field in which we now all live and work. Martin was trained by the iconic Ronnie Mac Keith and inherited Ronnie’s mantle as a quintessentially ‘English’ character. Having had the privilege to know Ronnie is his last years, I would often ‘hear’ him in Martin’s observations and teachings!

In addition to his career as a clinician and academic leader, Martin was a published poet and novelist, and the founding editor, in 1959, of ‘Ambit’, an arts magazine that pushed the boundaries and strove to unite the many forms of artistic expression. Thus, while Martin’s ‘day job’ was developmental disability, his passion was the arts, of which he had considerable knowledge. One particular example comes to mind: In 2004 at the AACPDM Annual Meeting in Montreal there was a special concert to recognize Martin’s retirement from the editorship of the Journal. One of the pieces was a somewhat unknown trio for flute, viola and harp by English composer Sir Arnold Bax, a distant cousin of Martin. Needless to say, he knew the music, though this was the musicians’ first performance of it, in honor of him! A personal ‘academic’ story that I have related countless times concerns my utter frustration, in 1988, with a paper we had (apparently) had accepted in DMCN, for which the editor (Martin!) requested reformatting in a way I thought I understood… but clearly did not! After resubmitting the new version of the paper I received a letter (this was before the Internet!) saying that he and others in the office had all read the paper, and no one quite understood it! He suggested putting it away for a few months and then reviving it.

I was very distressed, and took the opportunity a few weeks later, when we were both in Chicago at the mid-year meeting of the board, to challenge him. I said: “Martin, I am confused… we revise the paper as you requested, and it says A… B… and C…” He responded, and here I quote directly: “Peter, when you say it I understand, but when you write it I do not!” Thus in this simple statement did I come to realize the challenge of expressing myself – ourselves – in two dimensions on a page as opposed to speaking with the nuance, inflection and emphases that are possible with oral communication. This is a lesson I learned, and applied, and have shared for well over 35 years!

Martin was a unique individual – a polymath fluent in literature, music, travel, writing, editing and being a challenging figure for all of us. He never accepted things at face value, but modeled ways of being analytically critical without anger or rancor.

We have lost a great man, and a great friend. We shall not soon see his like.

Rest in peace, Martin. We all owe you so much.

Alfred L Scherzer MD, EdD, FAAP - AACPDM Past President (1986)

Robert W. Armstrong, MD – AACPDM Past President (2004)

John F. McLaughlin, MD – AACPDM Past President (1992)

Committee Corner

Adapted Sports & Recreation
Submitted by: Susan V. Duff, EdD, MPT, OT/L, CHT (Committee Chair)

The Adapted Sports & Recreation Committee encourages all members to check out the latest reviews on the Adapted Sports Journal Digest, a free online resource that provides brief, easy to read reviews of recent literature pertaining to adaptive sports, recreation, and physical activity.

Advocacy
Submitted by: Lauren Fetsko, DO (Committee Chair)

The Advocacy Committee is focused on activities that advocate for inclusion and services for people with disabilities. This is shown through the Committee’s review of the Advocacy Toolkit, which serves as a free resource to practitioners and individuals with CP. The Advocacy Toolkit is currently undergoing revisions.

Awards
Submitted by: Michelle R. Christie, MD (Committee Chair)

The Awards Committee would like to thank all of those who submitted applications for the 2024 Travel Scholarships, including the Student, Travel, and OrthoPediatrics® Travel scholarships. The Committee will begin reviewing the applications. More information about AACPDM awards can be found in the Professional Opportunities tab on the AACPDM website.

Awards Committee

Communications
Submitted by: Mercedes Ruiz Brunner, PhD (Committee Chair)

The Communications Committee continues to encourage all AACPDM members to follow and engage with AACPDM on social media. They recognize that social media is an important tool to disseminate the work of the Academy and requests that all members continue to interact, by liking, sharing, and commenting on AACPDM social media posts, when possible.

Complex Care
Submitted by: Kristie E. Malik, MD (Committee Chair)

The Complex Care Committee continues to promote and share materials and publications relevant to complex care including clinical, educational, research, and advocacy resources through the work of the Complex Care Special Interest Group. The Committee invites all AACPDM members interested in complex care issues to sign up for the SIG here.

Education
Submitted by: Maurice G. Sholas, MD, PhD (Committee Chair)

The Education Committee is excited to share that registration for the 2024 Spring Symposium is now open. The Spring Symposium titled, “Modernizing Education for the Next Generation – Tips for Creating an Engaging and Dynamic Educational Experience,” will focus on introducing the theoretical underpinnings of adult learning theory and provide three examples of instructional techniques including Narrative Medicine and social media-based knowledge dissemination and engagement, and gamification. More information can be found on the AACPDM website.

International Affairs
Submitted by: Marcin J. Bonikowski, MD, PhD (Committee Chair)

The International Affairs Committee would like to thank all of those who submitted applications for the International Travel Scholarship, who are dedicated to disseminating the knowledge acquired at the AACPDM Annual Meeting to others in their home country. The Committee will begin reviewing the applications. More information about the International Travel Scholarships can be found on the AACPDM website.

Lifespan Care
Submitted by: Unoma Akamagwuna, MD (Committee Chair)

The Lifespan Care Committee welcomes all AACPDM members to share the work of the Lifespan Journal Digest, a free online resource created to promote and share evidence-based information about aging with childhood-onset disabilities. The Lifespan Journal Digest routinely spotlights recent literature focusing on lifespan care issues, including the transition to adult care, aging with a disability, and adult outcomes.

Membership
Submitted by: Kathryn Sigford, MD (Committee Chair)

The Membership Committee would like to remind all AACPDM members who have not yet renewed their membership for the 2024-25 year, to please do so by visiting the Member Portal. The Committee will continue to review new membership applications as necessary and encourages all members to invite a friend or colleague to apply for AACPDM membership.

Council Updates

Care Pathways
Submitted by: Jilda Noel Vargus-Adams (Council Chair)

The Care Pathways Council is excited to report on the year’s progress. One focus has been on revising the guidance documents for creating and maintaining Care Pathways, which is ongoing and nearing completion. At the same time, we have also seen changes in the Care Pathways provided on our Academy website. Those that are undergoing revision are still available and informative. You can access all of them on the website 24/7.

The Care Pathways Council wishes to thank and congratulate all the Academy members who have shared their time and expertise to develop and maintain these Care Pathways. We also want to encourage all Academy members to utilize this valuable resource where a couple of clicks lead to a practical algorithm and supporting materials usable at the point of care, even during a patient visit. Stay tuned for more developments in the next several months.

Community Council
Submitted by: Angi Harris (Council Chair)

The Community Council works to enhance the mission of the AACPDM to create greater opportunities to collaborate for the health, wellness, and service of those with cerebral palsy and other childhood-onset disabilities. The Community Council is currently planning the 2024 Community Forum as part of the 2024 Annual Meeting. Video recordings are available from last year’s Community Forum here.

AACPDM SIG Highlights

Technology SIG
Submitted by: Michelle Larin

The Technology Special Interest Group (SIG) is pleased to announce the success of their first meeting in March, featuring speaker James Sulzer, PhD and father of a child with a traumatic brain injury.

Dr Sally Evans, MD (Division Chief of Physical Medicine and Rehabilitation at Children's Hospital of Philadelphia) has been appointed the SIG chair for the inaugural years (2024-2025), with Dr Hana Alazem MD, MSc PT (Children's Hospital of Eastern Ontario, Canada) assuming leadership in 2026/27.

The group welcomes new members to collaborate regarding the use of technology in rehabilitation, how best to conduct research on cutting edge technology, translate this knowledge, enable equitable access to technology for all, and more! If you are interested in joining the SIG please sign up here or for more information, use the SIG’s new email address: TechSIG@aacpdm.org.

Adapted Sports & Recreation SIG
Submitted by: Gavin Colquitt

The Adapted Sports & Recreation SIG is delighted to share our progress and future directions as we lay the groundwork for our newly established group. Our inaugural meeting, which featured Clayton Frech, the visionary behind Angel City Sports, highlighted the critical role of adapted sport and recreation in local communities. We aim to build a supportive network of members and non-members that empowers individuals with disabilities to access, compete, participate, and excel in adapted sports and recreation, whether in competition or leisure activities.

At the upcoming annual meeting in Quebec City, we will convene in person for the first time. This gathering is a pivotal step towards shaping the future of the SIG as we discuss our goals, strategies for moving forward, and how to align our efforts with the Academy's vision, mission, and strategic plan. We encourage all members to join us in Quebec City. Your insights, experiences, and passion are invaluable as we strive to enhance the landscape of adapted sports and recreation in the communities we serve.

Elements of Data from NINDS

Submitted by: Joline Brandenburg, MD, Chair, CP CDE Oversight Committee & Carolina Mendoza-Puccini, MD, NINDS CDE Program Officer, National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH)

Did you know that the AACPDM partnered with the National Institute of Neurologic Disorders and Stroke (NINDS) to publish a publicly available set of recommended and validated instruments and common data elements (CDEs) for research involving children with cerebral palsy? These data standards, known as the NINDS CP CDEs, were initially published in 2016 on the NINDS CDE website. Since this time, the CP CDEs have undergone updates by the CP CDE Oversight Committee (OC), with many of these updates and additions based on public feedback and suggestions, including those from AACPDM members. Currently, the CP OC is developing neurosurgical CRFs and CDEs for Selective Dorsal Rhizotomy and Baclofen Pump implantation. While the intent of CP CDEs is to facilitate research involving children with CP, particularly research seeking funding from NIH, the CP CDEs also have great value in use for education purposes and clinical practice. You do not need to be a researcher to access and use this information. We encourage all to go to the CP CDE data standards page and review the case report forms, instruments and CDE recommendations. Then, use the NINDS CP CDEs for your research, clinical practice, and education needs. If you feel there is something missing, needs updating or review by the CP CDE OC, contact us at https://commondataelements.ninds.nih.gov/connect_with_us. Please pass these links along to others to increase awareness of this incredible tool that was made possible by the support of the AACPDM and NINDS.

Mac Keith Press March 2024 Highlights

Mac Keith Press

Promoting Physical Activity and Fitness

Society discounts apply
*Simply enter society coupon code when ordering here*
Get in touch with admin@mackeith.co.uk if you have any questions.

Book cover

Exercise is crucial for overall health, with mental and physical benefits. Promoting Physical Activity and Fitness offers clear guidance on evaluating, training, and supporting physical activity for individuals with childhood-onset disabilities. It covers fitness assessment, safe engagement, progress tracking, pain management, and tailored information for specific groups. The book provides easy-to-understand, evidence-based fitness information, suggests suitable activities for various conditions, includes helpful tables, and is authored by a diverse team of experts.

For a more in-depth overview of the book, watch the editors, Désirée Maltais and Reidun Jahnsen, in a lively discussion. Select your preferred format – available in Hardback or eBook – and stay informed with the latest guidance on disability physical activity.

Buy Now
Look Inside

DMCN header

DMCN April 2024 Issue

DMCN Editor's Choice

Principles for good scholarship in systematic reviews

In this invited review, the authors address how to meet methodological conduct standards applicable to key components of systematic reviews. These standards are placed in the context of good scholarship principles for systematic review development.

Key papers in Developmental Medicine & Child Neurology this month:

Prevalence of attention-deficit/hyperactivity disorder and autism in 12-year-old children: A population-based cohort

This paper investigates the prevalence of ADHD and autism spectrum disorder in a population-based birth cohort and correlates the findings with prenatal and perinatal factors.

Growth patterns in individuals with CDKL5 deficiency disorder

This study compares growth in individuals with cyclin-dependent kinase-like 5 (CDKL5) deficiency disorder with population norms and investigates the effect of gastrostomy on growth.

Check out the rest of the April 2024 issue here
Visit Early View to see the most recent publications.

Top podcast

podcast

In this podcast, André Bachmann & Caleb Bupp discuss their paper: Bachmann–Bupp syndrome and treatment.

Watch the podcast

Letter from the Editor

The Academy celebrated Cerebral Palsy Awareness Month in March by sharing helpful articles, research studies, online resources, and even photos of the AACPDM Community Council and Board of Directors dressed in green. The Academy is grateful for all the efforts made every day to work towards the vision of advancing the health and well-being of all individuals with cerebral palsy and other childhood-onset disabilities.

As Spring is in full swing, the Academy is proud to offer several annual award opportunities to its members, including the Mentorship Award, Corbett Ryan Pathways Pioneer Award, and the Fred P. Sage Award. The Academy is also busy preparing for the 78th Annual Meeting, and registration will open in May.

There is always something exciting happening at the Academy, and I hope you continue to take advantage of all your membership has to offer.

Julieanne P. Sees, DO, MBA

Julieanne P. Sees, DO, MBA
AACPDM Newsletter Editor