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President's Message
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
Maureen O'Donnell
President
jd352@columbia.edu
News You can Use
2012 State Medicaid Rankings
Find out where your state ranks in providing disability services.
http://www.disabilityscoop.com/2012-state-medicaid-rankings/
UCP Announces Success of the First World CP Day and Challege
International fundraising and fitness event raises over $700,000
More than 5,800 people vote for World CP Day ideas to change the world
Washington, DC (October 22, 2012) – United Cerebral Palsy (UCP) has announced the final results from the first annual World CP Day and the World CP Challenge, an international awareness and fundraising campaign for people living with cerebral palsy.
World CP Day, held on September 4, marked the beginning of a month dedicated to ideas to make the world a better place for people living with cerebral palsy. 461 ideas were submitted to the “Change my world in 1 minute” contest, which challenged people to come up with ideas that would help individuals with cerebral palsy through improved mobility, independence, accessibility, communication or social connection. Over 5,800 votes were cast, and the World Cerebral Palsy Day Panel is now reviewing the proposals. The winners will be announced in March, 2013, and researchers, innovators and inventors will be given grants to turn their ideas into reality.
Inventor applications close November 30, 2012
World CP Day also served as the kick-off for the World CP Challenge, a month-long event to raise awareness, encourage people to exercise, and raise money to support individuals living with cerebral palsy. Throughout September, teams from around the world exercised and raised donations to help people with cerebral palsy and other disabilities. A total of 6,999 people, including 2,183 in the United States, formed teams and entered their activities and fundraising efforts on the World CP Challenge website—and raised a total of $774,399 worldwide.
"The success of our first World CP Day and the World CP Challenge is an incredible achievement, and I am so proud of the efforts of all of those who participated. From innovative ideas submitted to the "Change my world in 1 minute" campaign, to the amount of donations raised, the dedication and commitment throughout the entire month of September was extraordinary," said Stephen Bennett, President & CEO of UCP. "I applaud the efforts of our teams around the world, and look forward to the exciting work to be done as we continue to strive to ensure that people living with cerebral palsy can live their lives to the fullest."
Strides in Research
GRANT OPPORTUNITY: Ethel and Jack Hausman Clinical Research Scholars Award
The Cerebral Palsy International Research Foundation (CPIRF), founded in 1955, has contributed more than $40 million for research grants to support approximately 500 research projects in the basic, clinical, and bioengineering sciences related to cerebral palsy prevention, cure, and treatment. The Foundation has provided guidance, funds and other resources to research programs in the United States, the Middle East, Canada, the UK, Australia, and Greece as part of its global commitment to research and medical discoveries.
CPIRF conducts an annual grant competition with two components. The research grant program provides up to $50,000 per year for two years for innovative and impactful pilot or exploratory projects that have a high probability of leading to NIH or equivalent funding. The Ethel and Jack Hausman Clinical Research Scholars Award provides up to $75,000 per year for three years to assist institutions in the United States to recruit and retain promising clinician-investigators in their pursuit of cerebral palsy-related research.
For the 2013 grant cycle CPIRF limits research proposal applications to the following three priorities:
- Charting and understanding loss of physical mobility through the lifespan, especially in adulthood, in persons with CP
- Research may examine the role of therapy (or lack of), assistive devices, accelerated musculo-skeletal aging, pain, environmental factors (physical, social, financial), brain changes, weakness, or others. The goal of such research should be to prevent loss of physical mobility.
- Research may examine the role of therapy (or lack of), assistive devices, accelerated musculo-skeletal aging, pain, environmental factors (physical, social, financial), brain changes, weakness, or others. The goal of such research should be to prevent loss of physical mobility.
- Application of state-of-the-art imaging to identify and understand changes in and correlations between brain structure and function following injury to the basal ganglia in the immature brain and in recovery (including response to interventions)
- Research focused on the basal ganglia in dyskinetic (extrapyramidal) cerebral palsy is particularly encouraged and will receive priority.
- Research focused on the basal ganglia in dyskinetic (extrapyramidal) cerebral palsy is particularly encouraged and will receive priority.
- Development and/or exploration of highly innovative therapeutic approaches to CP that are likely to have significant functional benefit and which are consistent with and demonstrate neurophysiological principles underlying restoration, recruitment or reorganization of brain structures (i.e. plasticity).
- Research may involve animal models or humans with developmental brain injuries and may range from “pure” exercise paradigms to device-augmented or pharmacologically-enhanced approaches.
- Research may involve animal models or humans with developmental brain injuries and may range from “pure” exercise paradigms to device-augmented or pharmacologically-enhanced approaches.
These priorities do not apply to the Hausman awards. Hausman awards are limited to U.S. citizens or permanent residents in positions at academic institutions. Research grants are open internationally. Mandatory letters of intent for both programs are due January 15, 2012. Full proposals are due March 1, 2013. Additional information and application forms can be found at www.cpirf.org. For logistical questions, contact Ms. Jacqueline Carmosino at jcarmosino@cpirf.org.
James A. Blackman, MD, MPH
Medical Director
jblackman@cpirf.org
Babies, start your engines!
Best known for his high tech “babies driving robots” research with Sunil Agrawal, Cole Galloway has recently added a low tech version – off-the-shelf toy racecars to provide mobility to children with crawling and walking problems, empowering them to be part of the action at home, in the daycare center, or on the playground.
Human Muscle, Regrown on Animal Scaffolding
Committee Updates
RESEARCH COMMITTEE
Research Forum
At the annual business meeting of the American Academy of Cerebral Palsy and Developmental Medicine (AACPDM) in Toronto, the membership was informed of an important effort to develop a consensus of research priorities in cerebral palsy for the Academy. Many of our committees were sensing the need for a concise statement of the priorities around research for this Academy for a variety of different purposes. The Board charged its members through a working group called the Research Forum Task Force to develop this consensus statement through the process of a 2 day Research Forum. The Forum will be held in Washington, D.C. on September 6 and 7, 2013, will include key stakeholders such as parents of children with CP, persons with CP, funders of CP research, members of the AACPDM, and other key researchers in the field of CP. Our Academy, as you all know, is made up of members from many disciplines and many countries and thus the Research Forum and it’s final statement should reflect that diversity. While the members of our Academy serve individuals with a broad range of disabilities, this consensus statement will focus specifically on the research priorities for cerebral palsy.
Essential to the development of this consensus statement of the research priorities of the AACPDM is input by each member of our Academy. You will be receiving a short survey soon through survey monkey created by members of the Research Forum Task Force. Please make every effort to complete this survey which is the first of two you will receive to gather the larger membership’s input into the development of our research priorities. If you have any suggestions or questions regarding the process of developing this list of priorities, please contact any of the Task Force Members as listed below.
The Research Forum Task Force is comprised of the following members of the Academy:
Eileen Fowler, PhD (UCLA Center for Cerebral Palsy): Board Member 2008-2011;
Ed Dabrowski, MD (Children's Hospital of Michigan): 2011/12 Chair of Research Committee;
Mauricio Delgaldo, MD (Texas Scottish Rite Hospital, Dallas) Board Liason to Research Committee;
Jane Anne Emerson, MD (University of Missouri) 2011/12 Chair of Advocacy Committee;
Kat Kolaski, MD (Wake Forest University) 2011/12 Chair of Treatment Outcomes Committee;
Jilda Vargus-Adams (Cincinnati Children’s Medical Center) Board Liason Multimedia Committee;
Sarah McIntyre, MPS (Cerebral Palsy Institute, Australia) created Research Priority Agenda for Australia;
Sarah Winter, MD (University of Utah) Chair of Research Forum Task Force, Board Liason to TOC and Advocacy Committees 2009-12)
Our Amazing Patients
A heartwarming story about two people with cerebral palsy determined to have the wedding of their dreams.
http://today.msnbc.msn.com/id/49363180/ns/today-weddings/
WATER BABY ... Josef Craig in the pool at an early age, and insets, from top, learning to swim, with friend Ben Stevenson, with his mum and dad, and celebrating his Paralympics win.
Published on Thursday 13 September 2012 14:00 Jarrow and Hebburn Gazette
SPLASHING in the pool before he could barely walk, this is the little boy who grew into a world-beater.
Josef Craig was 12 weeks old when he was taken by mum Kim to Hebburn Swimming Pool for the first time.
Back then, she had no idea her baby boy had been born with cerebral palsy.
Josef was 10 months old when he was diagnosed with the condition, which disrupts the nerve signals between brain and muscles, leading to problems with movement, posture and co-ordination as the child grows up."
As she opened up Josef's family album exclusively for the Gazette today, Kim said: “When Josef was diagnosed with cerebral palsy, I was determined he wasn’t going to use it as an excuse not to live a full a life as possible."
"I wanted him to always be strong, and I always encouraged his dreams – even when he said he wanted to be a Paralympic swimmer."
It was this passion and determination that would one day help Josef to become a Paralympic champion."
He was enrolled in swimming lessons, and at the age of nine became a competitive swimmer."
Kim, alongside father, Ken, has been at Josef's side throughout his journey from unknown schoolboy to Paralympic gold medal winner and record breaker."
Recalling seeing her boy finally realize his dream, she said: “He is so young and I just didn't know how being part of the Paralympic team was going to affect him. All I wanted was for him to get a personal best. I just didn’t want him to feel he had let himself down."
Despite missing out on medals in the 50m and 100m freestyle events, he went on to take gold in the men's S7 400m freestyle finals, breaking the world record twice in one day."
Kim said: “When he broke the world record in the heats, I had to keep looking at the board to make sure I wasn't seeing things."
"Then when the finals came, I just thought whatever happens, at least he can come away knowing he'd broke the world record."
"I never thought for a moment he would repeat his earlier performance – but he did."
"From the day he was born, he has never ceased to amaze me. He has proven that if you have a dream, you can, with hard work and determination, make it happen.
"It was hard when Josef was diagnosed with cerebral palsy, but I was determined to support him in whatever he wanted to do."
"What he has achieved shows just because someone has a disability doesn’t mean that they can’t achieve great things.
"It’s about finding the right path, and for Josef it was swimming."
Book Nook / TV Reviews
So many Everests
By Diana and Victoria Webster
This memoire is written by a mother and daughter who have quite different viewpoints yet similar personality traits (mothers and daughters out there, does this sound familiar?). Diana is the mother and she recounts the birth and childhood of Victoria who has ataxic cerebral palsy. The family is British by heritage but lives in Finland due to the parents’ careers. Both parents are professors and the dad dies when the children are middle school age. Mom is left to parent the two children and must continually reason with folks who misconstrue Victoria’s slow speech and mild physical differences with intellectual disability. Victoria decides by age 11 that she wants to become a physician. She never waivers and persists in achieving each milestone required along the way. Eventually Victoria becomes the first specialty certified ER physician in Finland-Sweden in 2007. Victoria is trilingual (English, Swedish and Finnish) and during her training practices medicine in all 3 languages. Daunting for anyone. I appreciated the very pragmatic tone of both authors. I loved the way both mother and daughter navigated the mountains that initially seemed so overwhelming.
Resources
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Readers include parents, caregivers, educators, professionals and people with disabilities themselves. What’s more, lawmakers and the nation’s most influential disability advocates rely on Disability Scoop to stay in the know.
http://www.disabilityscoop.com/
Note from the Editor
Once again I write to you in the midst of a storm, this time Sandy. We in Upstate New York are lucky so far in that we've seen some wind and rain but nothing like in the coastal areas. My family like many others, reached out to make sure everyone had a plan to be safe. I’m thinking of my niece, Jamie (who some of you know) who lives on Long Island and elected to stay put during the storm.
I'm happy to announce that we have an official liaison with the American Physical Therapy Association Section on Pediatrics. I will be working with Zachary Sutton. Our initial goals are increasing dual memberships and collaborating on continuing education offerings. We'd like to hear ideas from you about other ways we might collaborate. Please email me at loganl@upstate.edu with your ideas. Any idea no matter how sketchy is welcome. We need to think outside the box on this one.
I hope you enjoyed our Toronto meeting as much as I did. The educational offerings were fantastic, the venue lovely, and the city easily accessible and welcoming. Great job to all who worked to make it so.
Best to all,
Lynne
Check it Out!
The Peer Gynt Project
I, PEER is a US/Norwegian/UK theatre production of Henrik Ibsen’s epic Peer Gynt starring Neil Hancock, a UK wheelchair-using actor as Peer, and is co-directed by conceiver/producer Caroline von Kuhn (US) and John Gould Rubin (US).
I, PEER has been developed as THE PEER GYNT PROJECT (2010-2012) in Oslo as a co-production with the Nationaltheatret of Norway at their International Ibsen Festival, in London through the Old Vic Theatre’s Old Vic/New Voices, and in New York through The Private Theatre.
We are re-discovering Peer today: a flawed soul wrestling with dreams and demons in pursuit of his fullest life. We aim to be truly accessible, to connect directly to a diverse and international audience, while shattering expectations of what is possible. We strive to surpass individual limitations, to surprise ourselves, to find joy in making work that is bigger than we are. We seek to startle our audiences into realizing that the inconceivable can become real; that we are all Peer Gynt.
At the most recent workshop in Norway, as Neil’s physical movement pushed new boundaries for him as an actor and therefore for our Peer Gynt, we discovered a new way to find his Peer. Based on two years’ work, we’ve decided to focus our work on the Ibsen text and look for the physical relationship of our Peer to the muscularity of the original writing. We’ve struggled ourselves to arrive at this direction; a struggle which has been Gynt-ian in its own right. Using what we’ve gained from the work we have done, we pare down to the two elements with which we began: the actor Neil Hancock and the text of Henrik Ibsen. What is the relationship of Neil’s wheelchair to the actor, the character and the play? What is Neil’s relationship to Peer? What is therefore our story? These questions are yet to be answered. Neil leads this pursuit in the next chapter.
Section on Pediatrics
Non-US PT's and other clinicians in pediatrics are eligible for this benefit through the American Physical Therapy Association's section on Pediatrics. http://www.pediatricapta.org/ is the link to the pediatrics section's partners option for non-pediatric section members who are pediatric practitioners. The cost is $75 and creates a way for non-APTA members to get the benefits of membership without the cost.
Why Should You Become a Partner of the Section on Pediatrics?
As a Partner of the Section on Pediatrics you will receive the following benefits:
- An annual online subscription Pediatric Physical Therapy, the Section’s award-winning, Medline-listed quarterly journal. You will be able to access PPT online and via podcast.
- Free optional membership in the Section’s six Special Interest Groups: Pediatric Sports-Fitness, Adolescents & Adults with Developmental Disabilities, Neonatology, School-based Physical Therapy, Early Intervention, and Hospital-based Physical Therapy.
- Members-only information on the Section’s Web site, including the latest reimbursement and legislative news.
- A twice annual Section newsletter, posted on our Web site, and monthly E-News blast e-mails.
- Answers to your questions via the Section on Pediatrics Online Community.
- Discounts on registration for Section courses, including the Section on Pediatrics Annual Conference, and on Section products.
- Most importantly, you’ll be part of a network of members – in your state, in your region, and across the country – and a part of a collective voice for pediatric physical therapy.