It is with great sadness that we mention the untimely passing of two of the Academy’s dear members, they will both be greatly missed.
|Alfred Healy, MD
1934 — 2012
View full obituary.
|Gregory Liptak, MD
1947 — 2012
View full obituary.
Making New Wineskins
Likewise, no one pours new wine into old wineskins. Otherwise, the wine will burst the skins, and both the wine and the skins are ruined. Rather, new wine is poured into fresh wineskins. (Matthew 2:22)
Where to start? Being elected the President of our academy will probably be the greatest professional honor I will ever have and one for which I thank each of you. With that honor comes the responsibility to be more than a caretaker of this academy which has been a world leader for education and research concerning disabilities for over sixty five years. Starting this job I recognized that in the past two years, under the leadership of Deb Gaebler-Spira and Scott Hoffinger, the Academy had turned a dramatic corner achieving never-before financial stability combined with renewed member excitement. Clearly, the Academy was ready to embark on a new trajectory with great anticipation and vitality. Maureen O’Donnell and I agreed that a strategic planning meeting would be required to harness and direct this energy
However, when I looked at the Academy’s systems and processes I was concerned that what was in place was old and may not be operationally flexible and expansive enough to function optimally in the face of new directions and plans. I was convinced it was critical that the energy and creativity of this era be fully captured and launched by structures designed to facilitate their success. Thus, I determined that it was my role in the presidential line to prepare the new wineskins for this new wine.
Our mission’s foundation revolves around education and research. In the spring we brought together members of the Publications, Continuing Education, and Multimedia Education Committees by hosting an Education Summit to see if there was a better way to streamline and coordinate our educational activities. Developmental Medicine and Child Neurology has achieved unprecedented success and notoriety with its current leadership. It is efficient and highly respected journal internationally. Although recertified by the ACCME to award CME credit for another four years, we learned that we needed to pay more attention to desirable physician attributes, and to knowledge gaps in the membership and those who attend the annual meeting. The explosion in social media was a challenge that we felt should be addressed and encouraged in a careful and deliberate fashion.
Under the leadership of Jilda Vargus-Adams, Larry Siegel, and Carole Tucker, the Education Summit produced several recommendations. One that I felt was the result of collective genius was the restructuring of the education committees. Instead of the current structure they suggested three committees: 1) a Publications Committee to oversee the journal and serve as members of the Editorial Board, 2) an Education Committee consisting of the Scientific Program Committee with an additional group to oversee other academy educational activities and eventually the ACCME review process, and 3) a Communications Committee consisting of people interested in using social media, other internet and digital outlets, an e-newsletter editor, and the web master. Work continues on finalizing each committee’s responsibilities and we are open to your comments and suggestions.
Our commitment to education was further demonstrated this year by doubling the number of student scholarships to the annual meeting and almost doubling the funding for international scholarships. Lesley Wiart has taken the lead on a new endeavor called the Transformative Practice Grant. The idea behind this educational program is for a junior Academy member to invite a senior Academy member to their institution. The senior member would have experience in developing a program that the junior member is trying to start. In this way the senior member (mentor) could help the younger member recognize and circumvent barriers within their institution that might prevent the successful implementation of a new clinical or research effort by the junior member. This provides an effective use of our senior member’s experience in the guest institution through cross-generational teamwork in the Academy.
The need for a coordinated research plan and voice within the Academy has been long recognized. Under the leadership of Sarah Winter with support from long-standing research proponent Eileen Fowler, the committee chairs of Research (Ed Dabrowski), Advocacy (Jane Anne Emerson), and Treatment Outcomes (Kat Kolaski) met in Chicago for a pre-Research Summit meeting to plan a Research Summit for 2013. The plan is to bring together organizations in the field of childhood-onset disabilities to develop a Consensus Statement on the need and direction of research in our field. In addition, prior to the annual meeting in Toronto, Kat Kolaski will join a subcommittee of the TOC for a tutoring session from Dr. Gordon Guyatt, a preeminent leader and pioneer in the field of evidence-based medicine.
We have learned that the tasks in our mission are too great for any individual organization to handle, but that when we partner with complimentary groups we can achieve impressive results. This was demonstrated in no greater way than this spring in Washington DC. Lisa Thornton and Jane Anne Emerson from the Advocacy Committee, and myself joined with members of the parent advocacy group, Reaching for The Stars Foundation (RFTS) to meet with lawmakers advocating for federal research funding for cerebral palsy. We met with Senator Johnnie Isakson of Georgia and Senator Tom Harkin of Iowa. Three weeks later we received an e-mail from a member of Senator Harkin’s staff informing us that NIH funding for research in cerebral palsy would be in the appropriations bill this year. Since the bill still has to pass, I would encourage all of you to email your senators and congressmen and women to support this funding. The success of this effort was only achieved through the partnership of a parent advocacy group (RFTS), and an academic academy (AACPDM). In particular, credit goes to Lisa Thornton, whose vision, energy, and leadership guided the way for a meaningful and coherent role for this academy in the field of advocacy.
Our newsletter is now electronic and we continue to experiment with and explore the use of social media to enhance and increase the communication and dialogue within the academy. The website continues to be a unifying force with frequent additions to the content and a highly functional members section. Concerning the latter, we are developing a calendar which will enable members to rapidly look up individual deadlines or scan several months to see what activities are current and upcoming in the Academy. We plan to color code this so that members may look for specific information (eg. committee news, events, and deadlines), or view the entire calendar of events.
Where to end? Newsletters shouldn’t go on forever and it’s hard for me to stop typing all the academy member accomplishments I have had the pleasure and honor of witnessing from my front row seat this year. It’s hard to imagine that people so busy with clinical, research, and home responsibilities donate so much of their time and energy to the working of this academy. But you do. Representing the people we serve, their families and communities, please accept my admiration and thanks. The future of this academy is bright. I can think of no finer Presidents to lead this academy in the future than Maureen O’Donnell and Rich Stevenson, and the slate submitted by the Nominating Committee is outstanding to the individual. This year we made the new wineskins. I have no doubt that the new wine will be the best yet.
Joseph Dutkowsky, MD
News You can Use
Funding for CP Research
The AACPDM's Advocacy Committee, Reaching for the Stars Foundation and Michael Kutcher have been working together to produce results!
Strides in Research
The American Academy for Cerebral Palsy and Developmental Medicine has partnered with the Pedal-with-Pete Foundation to fund research with potential to improve quality of life for individuals with cerebral palsy (CP) and other neurodevelopmental lifelong disabilities.
Large Amplitude Training for Children with Cerebral Palsy (LATCH)
A Planning and Feasibility Study is to engage in a thorough and reflective planning process that will result in submission of a proposal for a large, collaborative clinical trial of a fun and innovative approach for rehabilitation in children with cerebral palsy (CP). The resulting clinical trial will test the ability of an episode of large amplitude movement training to improve gait and functional mobility, both major limitations for children with CP. As a result of this planning grant, we will be one step closer to helping individuals with CP move toward a life that does not include continuous involvement in therapy throughout their childhood and youth.
CP is the most common cause of childhood disability around the world. Although there are many different therapeutic approaches to intervention for children with CP and their families, few of them have demonstrated effectiveness for improving functional mobility and balance. One reason for this is that most approaches do not provide adequate opportunity for the sort of high-volume, task-specific practice that is required to bring about meaningful change. Another reason may be that the type of instructions that are given with conventional rehabilitation methods may be difficult for individuals with CP to process during challenging movements.
An innovative intervention in which patients participate in 4-week episodes of high-volume, task-specific practice of movements that are functional and meaningful to them has been demonstrated to effectively improve balance and walking in adult patients with Parkinson’s Disease. In this large-amplitude approach, patients with PD are asked to focus all their attention on making the movements bigger and more intentional. Therefore, instead of patients having to focus their attention on many different task components or qualities of movements, patients are asked to focus their attention directly on making movements bigger.
Like individuals with PD, children with CP tend to use small movement patterns and must focus on controlling many different aspects of their posture and movements during functional activities such as walking. In a pilot study of children with CP, 3 of 5 children demonstrated significant improvements in walking speed and stride length after only one, 20-minute session.
The interdisciplinary team of investigators from the University of Nevada, Las Vegas has identified the following specific aims for this planning grant:
- Identify potential collaborators needed for a large-scale study of large amplitude movement training including statisticians and other key collaborators/consultants.
- Plan successful recruitment strategies at multiple sites to ensure adequate statistical power for the study.
- Prepare to pilot-test a “day camp” session in which children in a similarly aged group would receive large amplitude movement therapy 4x/week x 1 week to test feasibility and effects on gait and functional mobility.
- Identify an appropriate external funding source to which a proposal for a larger scale, clinical trial of this intervention, including examination of dose response relationships, would be prepared.
People who are interested in learning more about how they might become a participating site or other information about the study:
Robbin Hickman PT, DSc, PCS
Multimedia Education Committee
The committee is delving into the social media arena and encourages all members to follow the Academy. There are highlights and insights to the Annual Meeting and much more. Click on the logos below and follow us!
Looking for a change of scenery?
The Academy has enhanced the online job posting system and we’ve had success. Periodically, medical institutions are in the market for new medical professionals and post the openings on the AACPDM website. View the current job openings at: http://www.aacpdm.org/job-postings/
The Training in Grantsmanship for Rehabilitation Research (TIGRR) building on 10 years of workshops, mentored and facilitated by Diane Damiano, Peter Rosenbaum, Richard Stevenson, James Blackman and Dennis Harper, will be offered in January of 2013 at the University of North Carolina, Chapel Hill. This offering is based upon a 10 year history of successfully providing mentorship to approximately 300 Junior and mid-level faculty from throughout the North America and in several foreign countries.
The upcoming intensive NIH supported grant writing workshop builds upon the successful model used by the Enhancing Rehabilitation Research in the South (ERRIS) workshops that resulted in many junior investigators receiving NIH and NIDRR level research funding. Unlike passive seminars on grant writing, selected mentees will come prepared to complete at least the specific aims for a grant proposal for submission to the NIH or other funding agency.
Please bring this to the attention of your colleagues and faculty.
Please feel free to contact any of us for further information.
Diane Damiano, firstname.lastname@example.org
Peter Rosenbaum, email@example.com.McMaster.CA
Richard Stevenson, RDS8Z@hscmail.mcc.virginia.edu
James Blackman firstname.lastname@example.org
Dennis Harper, email@example.com
Our Amazing Patients
AssistiveWare - It really has become his voice
Lexie Cooper-Barnes, 5-Year-Old With Cerebral Palsy, Says First Words Through Special Computer
Katie Beckett Leaves Legacy For Kids With Disabilities
Book Nook / TV Reviews
26: A Behind-the-Scenes Tour of Life with Cerebral Palsy
By Stuart Maloney
Stuart Maloney was dead for twenty-six minutes when he was born, which led to brain damage and cerebral palsy. Stuart describes his triumphs and tribulations in his memoir 26. His family was told he would not live beyond his preschool years. He describes his trials and successes in his own voice. His memoir is an inspiring story of courage, determination, and a will to live. Available on Amazon.
This is a first for your editor, not only watching but reviewing reality TV (better known as boredom kingdom in my house). However that was before Push Girls! Push Girls premiered in early June and is the new reality show on the Sundance channel profiling four “hot babes” in wheelchairs. I watched 2 episodes and am impressed that the show appears to show the reality of life in a wheelchair with all the classic injury issues, family drama and importance of friendships we all face. The wheelchairs themselves are quite tricked out and a treat to appreciate. Watch it, recommend it to your patients, get those ratings up!
|Transition Resources Checklist for Occupational
Wants People With Mobility Disabilities to Have a New Attitude Although TheMobilityProject.com, a website aimed at people with mobility-related disabilities, their families and caregivers, launched March 1, the project has been 10 years in the making. Please visit: http://themobilityproject.com for more information.
For more information, visit us on Facebook.
Did You Ever Wonder How a Wheelchair Vehicle was Built?
"How It's Built," a powerful new video that details the conversion process of a Honda Odyssey minivan into a highly specialized vehicle for the disabled, was released to the public on Feb. 22, 2012. The video, which is approximately 10 minutes, provides an in-depth, behind-the-scenes look into the engineering and design process that has enabled countless wheelchair users across the country to regain their independence.
"I don’t know of a more profound video about our industry than 'How It’s Built'," said Doug Eaton, president of Vantage Mobility International. "It explores the spectrum of design and technology behind mobility vehicles that’s been 30 years in the making. Most importantly, 'How It’s Built' is engaging, full of energy and offers exciting views of a vehicle that has, until now, been an otherwise overlooked design marvel.”
"How It's Built" was filmed in Phoenix, at the VMI manufacturing plant. Directed and produced by RealWorld Marketing, it features the story of a Honda Odyssey minivan that is fully disassembled then re-engineered and re-built with the VMI Northstar in-floor ramp design. Using advanced Lean-Six Sigma manufacturing processes, the Odyssey undergoes a full rotisserie, custom transformation that’s rarely seen in an automotive manufacturing setting.
"How It's Built" was launched in advance of National Mobility Month, which will be celebrated in May and is being championed by NMEDA, the non-profit trade association for mobility equipment dealer and manufacturers.
"As an engineer who worked on the Apache helicopter for many years, I truly enjoyed watching this video," said Hal Wochholz, current VMI customer. "I think 'How It’s Built' tells an incredible story of the high level of engineering and mechanical design that VMI puts into their wheelchair accessible vans. The fact that VMI can build a van with this much complexity, and do it consistently without compromising the original quality of the design, is simply amazing. And, as the video points out, not only are these vans beautifully engineered to OEM specs, they also meet or exceed the safety standards of the National Highway Traffic Safety Administration. As a VMI customer, that’s very important to me.”
To learn more about the mobility vehicles or to watch "How It's Built," visit www.HowItsBuilt.tv.
ABOUT VANTAGE MOBILITY INTERNATIONAL
66th Annual Meeting – Creating Connections
Early bird rates end August 1st.
During this year’s meeting, there will be abundant opportunities for you to meet new colleagues and reconnect with your peers at the various Creating Connections locations throughout the meeting.
Toronto: Local Interests – Wednesday 5:30 pm
Take a brief moment to listen to a Toronto historian provide information about Toronto and the local sites.
Welcome Reception – Wednesday 6:30 pm (Westin Harbour Castle Hotel)
Enjoy the tastes of Toronto while enjoying your time with colleagues, all in preparation for the high-quality educational offerings that lie ahead!
Creating Connections Lounge Areas – throughout the meeting
In an effort to encourage mingling and networking, you’ll find designated lounge areas for small groups that can gather and share information.
Get Fit! – every morning around 6:00 am (begins on Thursday)
Get and early start by movin’ and groovin’ with a group-led running or walking groups outside the hotel – rain or shine! These activities will get your blood flowing for a long day of educational enhancement!
Wine and Cheese Poster & Exhibit Review – Thursday 6:00 pm
Sponsored by Holland Bloorview Kids Rehabilitation Hospital
Grab a glass of wine and small snack while you view and mingle with our loyal exhibitors and poster presenters.
Toronto Dine-Around – Thursday evening, various times
Various local Toronto restaurants have tables reserved for our attendees. Please sign up on the designated sheets outside the registration desk. Grab a group of colleagues and have a great time!
Learning Lunches – Friday 12:00 pm
Sponsored by Medtronic
This new concept provides unique venues for learning in an informal way with targeted conversations created, managed and executed by attendees! You will need to register for this event since space is limited.
- Bone Health
- Complex Care in Children
- Intrathecal Baclofen Therapy
- Muscle Research
- Outcome Measures
- Virtual Reality
Celebration Dinner Event – Friday 6:30 pm (Hockey Hall of Fame)
Whether you are a hockey fan or not, you are sure to have a wonderful time! The Hockey Hall of Fame is an excellent venue to host bountiful stations of food and drink plus entertainment including music, dancing and games throughout the complex. It’s not just for hockey anymore so don’t miss this experience!
Letter from the Editor
Lynne Romeiser Logan, PhD PT PCS
Greeting as always from Upstate New York where the summer is hot and beautiful. I’ve added biking to my summer repertoire this year. I have a bike group, a book group, at least 3 sailing groups and am enjoying all of them. I garden on my own, but there are numerous garden groups in the area. I think the groups give us permission and motivation to get out there and do what we like to do.
I hope you enjoy the new electronic format of this newsletter. We’ve included links to our Facebook page and websites of interest. Sign up to be our friend on Facebook! We hope to have more frequent electronic newsletters and now that we have a format, please contact me with anything you’d like to see included. I’d love to let everyone know what your committee or group is doing. This month I’ve added a Resources section where I put contact information for lots of interesting related information for you and your patients. If you have something you’d like added to the Resources sections, just email me at firstname.lastname@example.org.
I look forward to seeing everyone in Toronto, I’m sure it will be a fabulous meeting.