Fall 2022

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AACPDM President’s Message

Dear AACPDM Members, Greetings! I am honored to serve as the President for the American Academy of Cerebral Palsy & Developmental Medicine (AACPDM) for 2022-2023. Over the past two years, the AACPDM demonstrated a great deal of strength and resilience with two very successful online meetings. I believe that this response from many of you was a strong reflection of your commitment to this Academy and the common vision that we share. I am consistently amazed at the collective efforts and energy of our members, particularly on the AACPDM Board of Directors, Committees, and Councils as well as the engagement of our Special Interest Groups (AACPDM SIGs). I look forward to working alongside all of them this upcoming year.

We were excited to return back to our in-person meeting in 2022; it was wonderful to see so many of you again. I would like to acknowledge the efforts of many people who made the 2022 a success, in particular Drs. Ben Shore and Laurie Glader (Scientific Program Committee Co-Chairs), Erin Freimark, AACPDM Senior Meetings Manager, our meeting sponsors and so many of you who submitted abstracts and led Preconference courses. Planning is already underway for the next in-person meeting in Chicago, Illinois, Sept. 10-13, 2023. The theme for the 77^th AACPDM Annual meeting will be Winds of Hope. I am confident it will be an outstanding meeting and I hope that you are able to join us. In addition to our annual in-person meeting, the AACPDM is exploring an additional educational option, a separate online program, to leverage new opportunities created by expanded use of online meeting platforms and ensure increased inclusivity in our educational offerings. Additional information will be shared in the near future.

If you have not had an opportunity to view the new AACPDM strategic plan, I encourage you to do so. The AACPDM vision is to advance the health and well-being of all individuals with cerebral palsy and childhood-onset disabilities. One of the greatest benefits of this academy is the opportunity to engage with a community of like-minded people with diverse disciplinary backgrounds, who all work towards this vision. Through global relationships and connectedness, we are empowered to stretch the boundaries of knowledge through research and implement evidence-based changes to clinical practice. I look forward to working with the Board of Directors and AACPDM Committees to operationalize the strategic plan this year. 

I would like to express gratitude to our Executive Director, Tamara Wagester and the hardworking AACPDM staff, who work diligently behind the scenes to support the many different activities of this organization. Over this next year, members will receive important newsletter and email updates about AACPDM undertakings and initiatives as we further focus on efforts on realizing our strategic plan. It is an honour for me to take on the role as President of the AACPDM this year. I will do my best to serve this Academy that has already given me so much in return.

Lesley Pritchard, PT, PhD
AACPDM President, 2022-23

First Vice President's Update

Congratulations to all who made the 76th Annual Meeting a huge success! After two years of virtual attendance, it was a joy to meet in person and celebrate the work of our Academy members. You really did “Make it Matter” and we will continue to do so through “Winds of Hope” in 2023.

I am excited and honored to serve as a member of the planning team alongside Dr. Bhooma R. Aravamuthan, MD, DPhil, and Dr. Theresa S. Moulton, PT, DPT, PhD who will be the 2023 program co-chairs. We have selected the theme, “Winds of Hope” for the 77th AACPDM Annual Meeting that will take place September 10-13, 2023 at the Chicago Marriott Magnificent Mile in Chicago, Illinois. Our Academy and all of our members represent “Hope” for so many children and their families. Please plan to come and celebrate that Hope in Chicago.

Please note that the meeting will take place over different days of the week in 2023, meeting from Sunday through Wednesday instead of Wednesday through Saturday. We are all excited to see how this change will allow for improved participation.

Please watch your email for notices regarding the call for abstracts opening in November, 2022. Also note that the deadline for the 2023 abstract submissions will be January 31, 2022. We look forward to seeing you in the Windy City to champion bright possibilities for the future of our Academy!

M. Wade Shrader, MD
AACPDM 1st Vice President (2022-23)

Past President Reflections

Looking back on the 65th Annual Meeting – the last time AACPDM was in Las Vegas, NV

Accepting the Challenge

It was bit windy when I stepped off the roof. There was a small ledge three feet down from the edge where I stood as the spotter and I did a final check on my harness and rope. All clear and I let out a length of rope in order to allow myself to fall back into a 10-15 degree horizontal position. I bent my knees and sprung back and forth a few times to get the feel for the tension on the rope and the feel of the wall. I pushed out releasing the fraction on the rope and fell two stories before gravity and the tension on the rope brought me back against the wall. I looked up the now twenty vertical feet to my spotter and realized there was no way back up. The only way out would be to rappel the remaining 49 stories to the base of the hotel below.

Ten years ago I was honored to be president of our academy during its last meeting in Las Vegas. For four incredible days 900 participants from 33 countries engaged in the incredibly eclectic multidisciplinary academic presentations and encounters that define our wonderfully unique academy. As entertainment we attended the Beatles Cirque du Soleil show and danced at a masquerade ball.

While putting together the program months before I received a flier indicating that there would be a fund raiser for Nevada Special Olympics at the hotel the same time as our meeting. The group was called, “Over the Edge”, and would offer the chance to rappel down the side of a building to raise money for worthy causes. Their longest rappel that would be at the Rio All Suites Hotel where we were meeting going down 51 stories. I initially brushed off the flier but kept going back to it. After all the theme of the meeting was, “Accepting the Challenge”, and it seemed like the right thing for the president to do to make it real. The first thousand dollars raised would go to Nevada Special Olympics. Beyond that it would go to the academy endowment fund (which turned out to be $7,000). I signed up.

Two of my fifty one stories down I looked up to see the staff of the AACPDM yelling to me and cheering me on from my 51st story suite. I waved back and bounced off the wall a few times. I pushed off hard once and found myself uncomfortably way too far out in open space. I only did that once. I started the rappel down the wall going one or two stories at a time until I encountered an unexpected finding. Several stories down there was a three to four foot step off to the wall. Instead of the secure footing I was used to from here down I would need to extend my legs, ankles, and toes fully to even touch the wall. From here on I would be essentially dangling from the rope horizontally stretched out to brush my toes against the wall to avoid spinning.

Struggling to maintain my position facing the wall the next event happened about twelve stories down. I was warned by the professionals that the friction brake on my harness would likely overheat and stop functioning sometime during the rappel because of my weight. It did. I grabbed the rope with my heavily gloved right hand and swung it behind my back to use the friction of the rope against my hip as a brake. It slowed me down enough so that I was able to regain control. The harness had an automatic emergency brake if one started to free fall and I had a one way radio clipped to my right shoulder so that the spotters could talk with you if you lost your nerve or locked up. I was determined not to let that happen.

The rest of the way down was a struggle to brush my toes against the wall to keep from spinning and to endure the increasing pain in my right forearm as the nylon rope slid through my gloved hand protecting me from a terrible burn. I was not aware of how close I was to the bottom when my feet hit the pavement and I landed backward. The spotter helped me to my feet with my adrenaline soaked legs and detached the rope from my harness. My right forearm was in excruciating pain and I couldn’t open my hand. I thought I had a compartment syndrome. I walked over to my wife, Karen, who gave me a big hug. I made it.

It was an exciting and productive year to be your president. I worked to stabilize the academy’s finances, designed and restructured the committees, introduced complex care as a priority to the academy, and made outreaches to stakeholders to encourage productive relationships between the academy and the persons and families we serve. All in an effort to make the new wineskins necessary to hold the new wine of the strategic plan to come. Yes, it would be nice to be known for doing those things but it appears my presidency will always be known for the four minutes and thirty eight seconds I spent on that wall (I know, someone filmed it and put on YouTube). That’s OK for it’s the first thing everybody said to me this year in Las Vegas, but everybody said it with a smile. That’s not a bad thing for there’s no question we could all use a few more smiles. So be it.

It’s interesting because I’m not a risk taker and I’m not particularly fond of heights but I’d do it again in a heartbeat. It was a rush!

Joseph Dutkowsky, MD
Past President AACPDM, 2012

This year’s meeting drew attendees from 28 different countries. The top five countries represented include:

• United States
• Canada
• Australia
• Israel
• United Kingdom

AACPDM 76th Annual Meeting: Recap

The American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) hosted the 76th Annual Meeting at the Mirage Hotel in Las Vegas, Nevada on September 21-24, 2022 welcoming 816 in-person attendees. The theme for this year’s meeting was “Make It Matter,” which represented an opportunity to reflect on how the Academy has moved forward, together and stronger from the COVID-19 pandemic. The 2022 AACPDM Scientific Program Committee welcomed 120 podium presentations, 99 scientific posters, 32 demonstration posters, 16 clinical observation/single case study posters, 25 morning seminars and 36 mini-symposia.

AACPDM would like to recognize this year’s award and scholarship recipients, including:

Committee Updates

Complex Care
Submitted by: Kurtis Sobush, MD (Committee Chair), Kilby Mann, MD (Committee Chair-Elect)

The AACPDM Complex Care Committee is diverse and comprised of a wide variety of professional disciplines to mimic the medical care teams that manage children with medical complexity (CMC). AACPDM provides one of the few “homes” for complex care professional development. Our committee develops multiple forums for academic discussion on complex care delivery and management. Through establishment of yearly pre-conference sessions at the annual meeting, this year we have partnered with education leaders to offer a session on “Schools as Members of the Complex Care Team.” We have developed enduring e-course content on complex respiratory care and pain assessment/control in non-verbal children. Our committee organizes the annual Complex Care Special Interest Group (SIG), a collaborative effort of our Academy to discuss a broad topic related to CMC. This year’s SIG will further explore the significant variability in defining CMC and the implications. Our committee is eager to add new members with interests in education efforts, advocacy and international registry creation for CMC.

Communications
Submitted by: Ginny Paleg, PT, DScPT (Committee Chair)

The Communications Committee uses coordinated strategies to share AACPDM announcements and promote research, tech, and disability awareness across several different platforms. Our key communications mediums include Facebook, Twitter, and Instagram as well as the AACPDM website. We are always looking for new ways to reach a wider audience and not only inform our members, but the public about the work and accomplishments of the Academy.

Lifespan Care
Submitted by: Caitlin Cassidy, MD (Committee Chair)

The Lifespan Committee has continued to work diligently to highlight topics and issues relevant to the lives and care of adults with childhood onset disabilities to the AACPDM membership. Our committee members worked with the Education Committee to develop an e-course on Pain and Fatigue in Adults with CP that ran this summer. We also established a new Lifespan Journal Digest, which is now live on the AACPDM website. In the Digest, you’ll find short reviews of 2-3 relevant journal articles each quarter. Our hope is that this will allow people to find “bite-sized” summaries of the information they need to work with this population! Finally, the Adults and Aging SIG group has continued to roll with Lifespan Committee support. We have hosted three meetings so far this year, and are looking forward to the next one, to be held during the AACPDM annual meeting in September.

Membership
Submitted by: Michele M. Tourne, PT DPT PCS (Committee Chair)

The membership committee will host quarterly Zoom webinars for members. The webinars focus on discussion and exchange of information with participants. Proposed topics are: submitting grant proposals; submitting a proposal for a course at the annual meeting, and for new members navigating/connecting at their first meeting. The Advisor/Advisee program matches experienced members with new members. We currently have Advisors willing to help and would like to engage more Advisees.

International Affairs
Submitted by: Sandra J. Hollung, PhD (Committee Chair)

The International Affairs Committee (IAC) congratulates the 2022 international scholarship winners; Vikas Trivedi, Orthopedic Surgeon from India, M. De Las Mercedes Ruiz Brunner, PhD, Nutritionist from Argentina and Buddhika J. Senevirathne, Physiotherapist from Sri Lanka. In addition to the complimentary registration to the annual meeting, the winners will have the opportunity to present their work; successes and challenges within their institutions/countries during the “International Scholar Highlight” during the Annual Meeting on Friday, September 23. The IAC encourages networking between all AACPDM national and international members during the Annual Meeting to support the work of clinicians in the field of childhood-onset disabilities from around the world.

Research
Submitted by: Christopher M. Modlesky, PhD (Committee Chair)

In 2022, the Research Committee sought support from the board to implement subcommittees to accelerate the amount and types of work that the committee could accomplish overall. The Research Advancement Subcommittee was formed by committee members interested with the shared objective to grow AACPDM’s active role in research stimulation through a series of activities that bring the research community together on a continuous basis and not just at annual meetings. Through the Research Advancement Subcommittee, the Research Committee is proposing an initial webinar series in support of this objective.

Adapted Sports & Recreation
Submitted by: Stephanie Tow, MD (Committee Chair)

The AACPDM Adapted Sports & Recreation Committee has been working on many amazing efforts this year! Committee members continue providing 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. Committee members have also been working on collating a list of adaptive sports, recreation, and physical activity resources across multiple geographic locations to share with AACPDM members as a useful resource for patients. Committee members have also been thoughtfully planning sessions for the AACPDM Annual Meeting, including multiple “Let’s Move!” physical activity sessions and the adaptive sports and recreation community forum session. The committee has also identified the recipient of the 2022 Duncan Wyeth Award – congratulations to Sarah Albus on winning this award!

Advocacy
Submitted by: Jason M. Edinger, DO (Committee Chair)

The advocacy committee has been busy this year! Our current exciting projects include building a reference toolkit on the AACPDM website that provides members with the information they can use to advocate for their patients at the healthcare, state, and national level. We are happy to report that the toolkit is now live on the website, and it will be updated regularly. In addition to the toolkit, we plan to send a survey to ask the membership how we can best meet their advocacy needs. We continue to collaborate with the AACPDM Community Council to identify the needs of persons with disability as well as their families will coordinate an Advocacy Panel for the Community Forum this year. The advocacy committee will also present a mini symposium that we would like to present at the educational conference in 2022 focused on various advocacy topics. Finally, we continue to identify important current issues or an initiative of great work that another organization is putting forward that are relevant to the membership. After a vetting process, we relay these to the communication committee for dissemination to the membership.

Community Council
Submitted by: Lynne Fogel, Chair of the Community Council

The AACPDM Community Council presented the 2022 Community Forum, a free educational event for individuals with cerebral palsy, and their families or caregivers. The Community Form provides an opportunity to hear experts discuss issues that affect both children and adults, and learn about new research, medical advances, and topics that promote inclusion, participation, or impact quality of life for those with cerebral palsy. The Forum can be viewed on the AACPDM YouTube channel.

AACPDM SIGs – Specially Designed for You!

Submitted by: Caitlin Cassidy MD, FRCPC, AACPDM Adults and Aging SIG Chair

Members of the Adult and Aging SIG were very excited to meet together in person for only the second time at this year's Annual Meeting in Las Vegas! Although various topics were brought up for discussion, the group decided to take advantage of meeting face to face and adopted an informal, roundtable type format. We focused our discussion around the ongoing challenges of building capacity in the system to provide care and support (medical and otherwise) to people with CP across the lifespan. It was a lively discussion with many potential spin offs and possibilities for future project planning. Thanks to all of you who joined us, we hope to see you all again (and more!) at our next virtual meeting!

Mac Keith Press Update

Plain Language Summaries

We are pleased to share Plain Language Summaries of selected DMCN papers. By presenting the key findings and significance of a study in easy-to-understand language, the content becomes more accessible to a wider audience, such as individuals with disabilities, families, friends, and professionals in different medical fields.

These are available on the Mac Keith Press website and will soon be available on the DMCN-Wiley site - keep an eye out to see the growing collection!

Graphical abstracts

In recent months we have seen many more graphical abstracts published alongside DMCN articles - see two examples for key papers this month below. We feel they are useful and effective at capturing the message of an article in a visual way.

To encourage the production of more graphical abstracts, we have set up a service to create them for authors for free. If you would like help creating one for your accepted/published DMCN paper, then please get in touch.

Hammersmith Neonatal and Infant Neurological Examinations

New resources: Hammersmith Neonatal and Infant Neurological Examinations

New to the Mac Keith Press website, you will find all the information you need to learn how to perform, score and interpret the Hammersmith Neonatal Neurological Examination (HNNE) and the Hammersmith Infant Neurological Examination (HINE). You will need to subscribe to view all the information about the HNNE, HINE and accompanying resources.

Click here to learn more!

Richard Robinson: Lifelong contributor to DMCN Virtual Issue

Richard Robinson was 'an excellent clinician, teacher, and researcher who just knew so much about everything' and a major contributor to Mac Keith Press for almost 50 years. As a tribute to his role and inspiration, we have collected the papers he published in DMCN over the years. The collection is introduced by our Editor in Chief Bernard Dan, who reflects on the continued impact of Professor Robinson's work and legacy.

Read the Virtual Issue here.

Wiley Online Library app

Access DMCN content on the go with the Wiley Online Library (WOL) app. The app is available on the App Store and Google Play.

Advantages of the app:

• Build custom research feed from your favorite journals and topic;
• Receive notifications when new issues are released; and
• Save research to your device for offline reading.

Please note, the old DMCN app has been discontinued. To access the latest content from DMCN, the new app needs to be installed.

AACPDM Member Page Updates

Updates have been made to the Mac Keith Press AACPDM Members Page. Check out the latest features here!

Letter from the Editor

Once again, a great meeting was presented in Las Vegas, Nevada, September 21-24. I trust you share my feeling of awe at the level and amount of discovery presented and are energized by the achievements of our colleagues. Each committee will be active going into the winter and the New Year with room for others to participate. Coming out of COVID-19 precautions, many established practices have been disrupted. They need to be re-established with the opportunity to improve on the previous patterns, some which are worthy of repeating for our mutual benefit. I hope you enjoy and are rewarded by this newsletter.

Steve Couch
AACPDM Newsletter Editor