Resources for children with cerebral palsy and their families, such as research and educational presentations regarding therapies, care, and a free cerebral palsy toolkit you can download!

A woman in a maroon graduation cap and gown and a gold sash sits in her wheelchair.

Winners! Cerebral Palsy Awareness Day 2023

Today, March 25, is the federally recognized Cerebral Palsy (CP) Awareness Day! We are excited to announce the winners for our inaugural CP Awareness Month photo contest. In February, we began accepting submissions in three categories that we thought were important to represent our community: kids, teen & young adults, and adults over 25. Each of the following submissions were selected by being the top three photos in these categories in votes out of 13,383 counted:

First Prize Winners ($100 each) [Adults | Kids | Teens and Young Adults]

A woman with black hair and red and white striped sweater looks surprised as her boyfriend proposes

He Put A Ring On It!:
We got engaged after dating for three and a half years! I was completely taken by surprise.

Neighbourhood Stroll With Daddy:
Lyndon has moderate spastic quadriplegic CP and epilepsy. He uses a walking belt for safety measures as he can have a drop seizure at any time. He loves getting outside and walking!

A young adult sits in her wheelchair wearing a purple wig with a bright pink feather boa next to Halloween decorations.

Halloween Fun:
One day each year it’s fun to dress up in a fun bright outfit and sing out loud!

Second Prize Winners ($50 each) [Adults | Kids | Teens and Young Adults]

A woman in a bright orange shirt with glasses and long blond e hair smiles in her power wheelchair

Playing Power Soccer:
Proud to be a part of the Overdrive Power Soccer team!
Photo credit: Mary Free Bed Rehabilitation Hospital

A child with her hair drawn back in high pony tail paints green on a CP support ribbon.

Cerebral Palsy Support Painting:
Ava is a happy, driven 3 year old with spastic hemiplegia CP. In this photo she is sporting her favorite “Cerebral Palsy Warriors are Magical” t-shirt while painting a CP support ribbon.

A teen girl rides an all terrain track chair across a rocky trail.

Adventure Is Out There!!:
Brianna is always up for an adventure, especially when it involves an Action Trackchair!!

Third Prize Winners ($25 each) [Adults | Kids | Teens and Young Adults]

A woman with a light blue and red helmet gets strapped into an adaptive sled by guides.

Adaptive Snow Skiing
Loving the feel of the cold air as she goes skiing down the slope, feeling free!

A young boy smiles in a navy blue top with red and white stripes while sitting in front of an electric keyboard.

Gabriel Loves Making Music On His Keyboard:
When Gabriel is in his stander, he loves playing music on his keyboard.

A teen is strapped into an adaptive ski by instructors with a German Shepherd in the foreground.

This Is My Cerebral Palsy:
My name is Kaelyn and I have been shredding down the mountain for the past four years. Adapted Recreation has been a game changer for me (and my family) and of course, Shadow my service dog.

Congratulations to each of these photographers and subjects for their selection and their prizes of $100 for 1st place, $50 for 2nd place and $25 for 3rd place.

In addition to these winners, the staff and volunteers of the CP Research Network voted for best overall photograph in terms of what represented the CP Research Network’s values. The winner is:

A young woman in a maroon cap and gown with gold sash smiles while sitting in her wheelchair.

Graduation
I mastered it!

Congratulations to Karyn for the photo in her graduation cap and gown and for the $500 prize!

Thank you to EVERYONE that participated – submissions, shares and votes. We hope the sharing of pictures and our awareness banners helped you all create awareness for CP and celebrate our vibrant community! Wear your green proudly today!

Webinar: Making a Difference with MyCP

A headshot of a smiling man with grey eyes and short dark hair. Paul Gross is the President & CEO of the CP Research Network.

CP Research Network CEO Paul Gross will explain how both community members and clinician researchers can get the most out of MyCP.

This month’s webinar turns the table on our usual “clinician scientist’s report on their study results” and focuses instead on how you can contribute to science as a member of the community or as a clinician.  Cerebral Palsy Research Network Chief Executive Officer, Paul Gross, will demonstrate the range of capabilities of and benefits from engaging in research through MyCP.  MyCP is a personalized, secure web platform for collaboration and contribution to research about the lived experience of having CP or caring for someone with CP.  The webinar is scheduled for Wednesday, March 29, at 8 pm ET via Zoom.

The primary way that MyCP allows community members to participate in research is through surveys hosted in a well-established academic research survey platform called REDCap.  Before community members can access surveys, we go through an informed consent process.  We will discuss the key areas of consent and the privacy and security of data to enable your participation in research.  Members of the research community will benefit from learning about how consumers participate in our research environment and how community members are informed of available studies.

MyCP includes personalized web resources, access to our award winning toolkit and other resources, and a private discussion forum.  The discussion forum provides a private and optionally anonymous platform for community members to interact with the physicians in our network to discuss research priorities, evidence-based treatments and to share important lived experiences.  The webinar will review how community members and clinicians can connect to improve outcomes for people with CP.

Please register and join us for this presentation and discussion so you can learn how MyCP can help you contribute to the conversation and the action to optimize the lifelong health and wellbeing of people with CP.  The webinar will also be recorded and posted to our website and YouTube.

Dr. Aravamuthan with long black hair over a white lab coat & Dr. Barber with shoulder length brown hair in a black suit jacket

CP Sensory Study Findings Webinar

Registration
Please provide your first and last name.
We will send the webinar pre-registration instructions to this address.
Register for the whole series (we will email you the details)?
Registration
Please provide your first and last name.
We will send the webinar pre-registration instructions to this address.
Register for the whole series (we will email you the details)?
The Cerebral Palsy Research Network will continue it MyCP Webinar Series next Tuesday, February 21, at 8 pm ET with a presentation of the findings of its Sensory Study that was conducted with our Community Registry last summer. Principal investigators, Bhooma Aravamuthan, MD, DPhil and Danielle Barber, MD, PhD, will co-present the results of their study. The study included input from adults with CP caregivers for children with CP.

Dr. Aravamuthan described the goals of the study in a short YouTube video. She explained that most treatments for CP focus gross motor concerns but sensory issues may play a significant role. Their findings suggest that abnormally decreased sensitivity to sensory input – especially the sense of touch — decreases with age especially in people with more limited mobility. Join us to learn how these findings relate to pain and how these findings may be foundational for the treatment of pain.

Dr. Aravamuthan is pediatric movement disorders neurologist at Washington University in St. Louis and a leader in dystonia research in the CP Research Network. Her Co-PI in this study, Dr. Barber, is an attending physician in the Division of Neurology at Children’s Hospital of Philadelphia. Both clinician researchers will be available for questions and answers after the presentation of their findings.

The MyCP Webinar Series is a monthly presentation of research findings for studies conducted by the CP Research Network. The series is free and open to all members of the CP community. The webinars use the Zoom meeting platform to allow participants to interact in real time with the researchers at the conclusion of the presentations. You can sign up for this webinar here. You can choose to signup for the whole series and received automated email invitations to each month’s webinar. You can sign up for our YouTube channel to get notifications when recordings are posted.

Cerebral Palsy Awareness Photo Contest announcement: examples pictures from last year's contestants are shown

Cerebral Palsy Awareness Photo Contest 2023

An adaptive basketball coach in a wheelchair lifts a boy with cerebral palsy overhead in his own chair to dunk a basketball

Last year’s Best Overall winner: Dawn McKeag: Slam dunk!

In advance of Cerebral Palsy Awareness Month, which runs each year throughout the month of March, the Cerebral Palsy Research Network is introducing the second annual Cerebral Palsy Awareness Photo Contest to highlight the lives and experiences of community members living with CP. The contest invites members of the community to submit up to five photos photos that depict their day-to-day life, adventures, challenges, joys, and journey. The CP Research Network has opened its gallery for submissions and will award $1,000 in total cash prizes to 10 winners on March 25, 2023 – the day officially designated as National CP Awareness Day in the United States.

“We started this initiative last year to fill in gaps in authentic photography for people with CP and to create awareness” said Paul Gross, President and CEO of the CP Research Network. “The community was abuzz with the opportunity to share candid pics of their lives with CP.” The CP Awareness Photo Contest seeks to celebrate the lives of people with CP in a way that can be used in the CP Research Network’s variety of education, awareness and wellbeing programs!

The CP Awareness Photo Contest is opens today on CPRN.ORG. Contestants must be members of MyCP and may participate as an advocate, clinician, researcher or community member. Prizes will be awarded as follows:

Category 1st Prize 2nd Prize 3rd Prize
Children (under 13 years of age) $100 $50 $25
Teens and young adults (13 to 25 years of age) $100 $50 $25
Adults (25+ years of age) $100 $50 $25
Best Overall $500


Winners will be chosen via a combination of votes and final selection by the CP Research Network. Contestants must sign a photo release as part of the entry process. Photos will be displayed on CPRN.ORG and CP Research Network social media channels. Detailed rules for entries can be found on the photo contest rules page. Dig through your archives or snap a new picture and submit it soon!
Thanks to Drew Beamer and Unsplash for this shot of a crystal ball in an extended hand with a view of the horizon

Stellar Year – Even Brighter Future

Dr. Ed Hurvitz, holds a mic while speaking to CPRN investigators seated classroom style at our Chicago meeting

Forty clinician investigators, community members and advocates gathered in Chicago in May 2022 to advance the research of the network.

The year 2022 was stellar for the Cerebral Palsy Research Network on several fronts — the creation of numerous new studies and funding to support existing studies, such as one focused on adult wellbeing and pain. We have had invaluable engagement with the community through our 11 webinars and our in-person research meeting in May. Additionally, we have implemented measurable standardization of care at 12 of our hospital centers through our quality improvement (QI) program. Finally, our partnership with the National Center for Health, Physical Activity and Disability has brought wellness programming to the CP community, and our new partnership with the University of Pittsburgh has begun providing us with data coordinating services.

The change in our business model that we set in 2021 has blossomed into a critical funding source that will sustain our future research enterprise and strengthen our team and infrastructure. Our research sites are supporting the network not only by volunteering their time to contribute to the CP registry and our quality improvement processes, but also by paying a participation fee to support the personnel and other resources necessary to run a high quality research network. These fees have allowed us to hire Dr. Kristie Bjornson as our scientific director and Dr. Amy Bailes to lead our QI efforts. In addition, we have been able to retain a consulting firm that specializes in data collection embedded in the electronic medical record which is a unique aspect to our registry and care improvement model.

A colored bar graph shows sites in the CP Research Network and the number of patients they have enrolled in the CP registry.

Our CP Research Network’s clinical registry has grown enrollments by more than 50% in the past year.

Our research efforts are already seeing the benefits of these investments where our May in-person investigator meeting facilitated the creation of six new research studies for the network to advance in parallel with our nine existing studies. Our existing studies have generated six new manuscripts three of which were published in 2022 and more are coming for 2023. Registries grew to 7,500 patients in our clinical registry (up 50% from the prior year) and 2,058 in our Community Registry (up 41%). These registries are now amongst the largest CP registries in the world. Our genetics study is entering its fifth year and on track to enroll its target of 500 patient parent trios and will reveal many previously unknown factors in the cause of CP. That knowledge will in turn let us begin to personalize treatment in the future.

Our quality improvement efforts are aimed at advancing the quality of care for CP now. We have four active efforts that are showing sustained improvement at multiple centers for the assessment of pain in adults, the consistent diagnosis of dystonia in CP and the surveillance of hips, the top cause of pain in individuals with CP. We have increased the assessment of pain in adults from a baseline of 24% to more than 90% of the visits. Similarly, we have increased the consistency of dystonia diagnosis from a baseline of 42% to just shy of 60%. For hip surveillance, we have examined the consistency of hip surveillance at CPRN centers and we are now using our registry to help identify the patients that need frequent hip surveillance. These care efforts are being spread to additional centers and being written up as manuscripts for publication enabling the CP Research Network to influence the treatment of CP worldwide.

Our wellness programs are focused on keeping people with CP physically active because evidence shows us the importance of exercise for health of people with disabilities. The MENTOR program to which we educate and recruit adults in the CP community has been very positively received by the people who have participated.


Many times over the past few weeks, I have recognized the timeliness of MENTOR for me, given my life stage, CP journey, and the added impact posed by my other health conditions. The MENTOR program helps me see how to manage all of that by building/reinforcing skills around what I can control (e.g., mindset, level of activity, and nutrition). At the same time, the one-on-one opportunities to meet with staff have helped me refine my approach.
Marji – MENTOR graduate

While we are excited by what we have accomplished in 2022, we are anticipating an even more impactful 2023. We have a big announcement planned for the coming weeks which will further expand and accelerate our research and education efforts. We are already on track to submit six to eight new grants and publish several more manuscripts. We hope to complete recruitment for our adult study of wellbeing and pain while continuing to follow adult these participants over the long term to increase knowledge about aging with CP. We are planning to release three new toolkits to strengthen our educational offerings. And we hope improve wellbeing in the community with more fitness offerings.

Stay well, stay tuned and thanks for all of your support and engagement in our work!

Dr. Garey Noritz smiles with salt and pepper hair, a blue dress shirt and wire rim glasses.

American Academy of Pediatrics Updates Report on Cerebral Palsy

A preview image of Dr. Garey Noritz leading to blog post ‘CP Stories: Dr. Garey Noritz’

Dr. Garey Noritz, who is the principal investigator for our CP registry, is an active member of the American Academy of Pediatrics and chairs of the AAP’s Council on Children with Disabilities.

The American Academy of Pediatrics partnered with the American Academy for Cerebral Palsy and Developmental Medicine to release an updated version of their clinical report on cerebral palsy entitled, “Providing a Primary Care Medical Home for Children and Youth with Cerebral Palsy.” The report is more comprehensive than the 2011 version, and that’s a good thing. Our understanding and knowledge of CP and its related conditions has grown exponentially since that time. Moreover, the updated report highlights some previously under recognized aspects of CP. This will help the CP community direct attention to the fact that CP isn’t just a childhood musculoskeletal disorder, but also includes other conditions which may need to be managed into adulthood. There is information on topics such as cerebral vision impairment (CVI), pulmonary conditions, hip dysplasia and swallowing issues among others.[1]

This revised version includes:

  1. Early detection of CP
  2. Transition to adulthood and transfer to adult medical care
  3. More information for pediatricians about providing general care for individuals with CP & collaborating with their specialists
  4. A list of family resources listed throughout the document that includes the CP Research Network and The CP Tool Kit.

When summarizing his perspective on the clinical report for cerebral palsy, Dr. Garey Noritz says, “We emphasize child and family strengths, family choice, and collaboration early on. Physicians also act as advocates who can help families navigate their relationships with the medical system, therapy providers, school, community groups and other resources.” -Dr. Garey Noritz, FAAP, FACP, lead author of the report and chairperson of the AAP Council on Children with Disabilities.[2]

The 2022 AAP clinical report is an outstanding resource for clinicians, and we hope that many of them will learn from it and refer to it when caring for their patients with CP. It is a modern and forward-thinking approach to managing the diversity and complexity of cerebral palsy. We have heard from many families and individuals who feel “lost at sea”, trying to access and coordinate their own care, perhaps this will help alleviate some of these circumstances.

References:
1https://publications.aap.org/pediatrics/article/150/6/e2022060055/190094/Providing-a-Primary-Care-Medical-Home-for-Children?autologincheck=redirected?nfToken=00000000-0000-0000-0000-000000000000

2https://www.aap.org/en/news-room/news-releases/aap/2022/major-health-organizations-release-guidance-on-identifying-treating-cerebral-palsy2/

A blog header show Liz Boyer with blonde hair and blue eyes smiling broadly.

Consequences of Falls Study Results: MyCP Webinar

On Wednesday, December 7 at 8 pm ET, Liz Boyer, PhD, will present the preliminary findings of her study entitled the “Consequences of Falls in Individuals with Cerebral Palsy.” This presentation is based on data that was gathered in part in our MyCP Community Registry during the months of July and August 2022. This study seeks to close a knowledge gap to better estimate how the burden of falls differs over a lifespan and between gross motor ability in individuals diagnosed with CP.

Dr. Boyer is a Clinical Scientist at Gillette Children’s Hospital in the Center for Gait and Motion Analysis and an adjunct assistant professor in the Department of Orthopedic Surgery at the University of Minnesota. She received her PhD in kinesiology with an emphasis in biomechanics and motor control. Dr. Boyer has been with Gillette since 2015 when she started as a post-doc.

The subjects that participated in this study ranged in age from five to 76 years old and were self-reported as level I – III (ambulatory) using the Gross Motor Function Classification System. More research is needed to identify characteristics of individuals who experience the greatest number of injurious falls including psychological and societal consequences even if falls are non-injurious.

People interested in watching the webinar can sign-up on the MyCP Webinar Series page. Dr. Boyer will be available for questions and answers with the attendees following her presentation of results. The webinar will also be recorded and posted on our YouTube channel.

Dr. Bhooma Aravamuthan reclines in a school bus, mask at her chin, she smiles warmly heading off to a CPRN investigator dinner in Chicago.

CP Stories: Pediatric Neurologist Bhooma Aravamuthan, MD, DPhil

Caring for people with CP is a team sport.
Dr. Bhooma –

Dr. Bhooma Aravamuthan says she fell in love with treating children with cerebral palsy (CP) as an undergrad.

Bhooma Aravamuthan, M.D., DPhil. A smiling woman with long dark hair wearing black rimmed glasses and a white lab coat.

Bhooma Aravamuthan, M.D., DPhil leads both the dystonia research efforts as well as the dystonia care improvements initiatives across the CP Research Network

Previously, she had been drawn to adult neurology. Her uncle had been diagnosed with Parkinson’s disease, and Aravamuthan, now Assistant Professor in the Division of Pediatric Neurology at Washington University in St. Louis, had been keen to pursue that field of medicine. But working with younger patients gave her new insight.

“My DPhil (PhD) was on studying deep brain stimulation targets for Parkinson’s disease in people and in rats,” she says. “When I started med school, I was convinced I would be an adult movement disorders physician conducting Parkinson’s disease research. Then I just fell in love with working with kids.”

The more she worked with children with CP, the more Aravamuthan saw a need for committed clinicians dedicated to enhancing the field of research.

“I felt I could best contribute there,” she says. “CP families are so savvy: they have so much to teach everyone they interact with. Yet, we paid them very little attention from a research perspective and had a limited amount to clinically offer them. I felt that, given my background, this was an area where I could make a difference.”

Ask Aravamuthan what she loves most about her job and she’ll reel off a long list. “I love the kids, I love the parents, I love my colleagues,” she says. “Caring for people with CP is a team sport – every day I feel like I’m part of a big team of people trying to achieve a shared goal.”

As a physician-scientist, the dynamic doctor spends much of her time in the lab advancing research into dystonia, a disorder that causes involuntary muscle contractions, abnormal postures, and involuntary muscle contractions and is prevalent in patients with CP.

“My lab uses machine learning techniques and targeted neural circuit manipulation in mice to understand what causes dystonia after neonatal brain injury,” she explains. “We try to develop techniques to optimize dystonia diagnosis in people with CP and apply these techniques to mouse models of disease.

“I love forming longitudinal relationships with kids and families and watching these kids grow and gain skills over time. I love providing families diagnostic clarity and letting them know about what treatments we have and how much we still have left to do.”

Her warmth for her patients was only enhanced when she became a mother herself. As well as leading the way in CP research, Aravamuthan is raising three young children – including twins!

“I think becoming a mother has helped me better relate to my families and given me a better understanding of how their specific goals and hopes for their child should drive my medical care and my research,” she says.

“Before I had kids, I asked my clinical mentor during Pediatrics training whether being a doctor made it easier to be a parent. She told me: “No, but being a parent made me a better doctor”. I think that’s true for me as well.

“My twins were born at 33 weeks and spent just over six weeks in the NICU. After that NICU experience, I spent a long time trying to reclaim what my perception of a “normal” motherhood was. But that doesn’t exist. I stopped trying to view my patients and families through that lens. Instead of helping them achieve what I assumed they wanted to achieve, I’d ask them about their goals and priorities.”

One such priority is the need for families to feel supported and heard as they transition away from childhood neurological care into adulthood.

“In medical school, you go on your pediatrics rotations and you see children with all kinds of chronic illness and then do your adult rotations and wonder, what happens to all those kids I saw last week when they grow up?” she says. “For CP, finding adult-trained providers willing to care for people with CP is tough. Because the lack of exposure to childhood-onset chronic illness is rampant even at the very beginning stages of clinical training, there is a lot of reticence to take on a population of people you don’t know much about. This is an issue that really needs to be fixed during training – there’s a huge pipeline problem.”

Dr. Bhooma, with long dark hair and glasses, leans into a table of her colleagues eating lunch at the 2019 CPRN investigators' meeting

Dr. Bhooma enjoys lunch with Drs Stevenson, Noritz, Glader, Nichols, Kruer and Rocque (counter clockwise respectively from her right) at the University of Michigan during our 2019 investigators meeting.

Day to day, Aravamuthan works closely with other key figures in CP clinical care with the shared desire to improve evidence-based medications, therapies, and surgical techniques through rigorous randomized-controlled trials and input from the CP community. She cites the CP Research Network as a key component of this goal as the network brings together a “supportive network of people interesting in improving the lives of people with CP across all disciplines.”

In 2020, she became the vice-chair of the Adults with Intellectual and Developmental Disabilities section of the AAN where she is working to educate adult neurologists about the need for ongoing care for people with CP.

As she continues her critical work, Aravamuthan is optimistic that with advocacy, research, and effort, the culture can be changed. “People realize that increased CP research across the lifespan, in particular in dystonia, is important,” she states. “Time will tell on the follow-through in terms of grant dollars and the clinical prioritization of CP clinics across the lifespan.

“Advocacy is critical for what we do. A lot of the lack of focus on CP is because people still think it’s a “wastebasket” diagnosis. They don’t see the clinical impact of it, the faces of the people who have it, or the fascinating research questions in CP waiting to be addressed. I had no idea that advocacy would be a part of my job, but it’s such a gift to be able to introduce someone to what an important topic this is.”

Drs Gad and Carmel in blue collared shirts with Gad in a blue blazer and Carmel in a lab coat.

Spinal cord stimulation and spasticity

Parag Gad, PhD, and CEO of SpineX smiles with an open collar blue shirt and dark blue blazer

Dr. Gad, CEO of SpineX, will present the preliminary data from their pilot study of noninvasive spinal cord stimulation in CP.

This month’s MyCP Webinar is on Monday, October 10 at 8 pm ET featuring a discussion about how noninvasive spinal cord stimulation can enable reductions in spasticity and improvement to gross motor skills. We have invited SpineX Chief Executive Parag Gad, PhD and CP Research Network Steering Committee member Jason Carmel, MD, PhD, to present a planned study of noninvasive spinal cord stimulation based on promising preliminary data developed by SpineX. Dr. Carmel, a pediatric neurologist who directs the Weinberg Family Cerebral Palsy Center at Columbia University, would lead one clinical site of this novel intervention for people with spasticity.

Although CP is largely due to brain injury, spinal cord circuits are altered by injury to the developing brain. Loss of motor and sensory connections alter the function of the spinal cord in CP and result in the spasticity which can impair the ability to walk, trunk control, other motor functions in addition to causing pain. Electrical stimulation has been shown to reduce spasticity and improves movement. Noninvasive spinal cord stimulation presents the potential to achieve these benefits with a wearable device. SpineX, a start-up company, has conducted a preliminary study with 16 people including people who can walk independently and wheelchair users.

Dr. Carmel organized a discussion at the CP Research Network’s annual research meeting to present the concept embodied in SpineX’s work for consideration in the network. Initially SpineX is seeking to conduct a trial using eight sites with one CP Research Network site at Columbia. If the trial is successful, it could be expanded to numerous CPRN centers.

Dr. Gad will present the evidence around spinal stimulation and explain the planned trial to the community and then be interviewed by Dr. Carmel to answer questions from the community about noninvasive spinal cord stimulation in CP and the trial. Community members interested in learning about this topic and technology can register for the webinar on cprn.org. The webinar will be recorded and posted to the network’s YouTube channel.

Dr. Amy Bailes with shoulder length hair, glasses, a brown jacket and salmon colored open collared shirt.

CP Stories: Dr. Amy Bailes Advances CP Care

Amy F. Bailes, PT PhD is the Director of Physical Therapy Research at the Cincinnati Children’s Hospital Medical Center and an Associate Professor in the University of Cincinnati’s Department of Rehabilitation, Exercise, & Nutrition Sciences. Her clinical work focuses primarily on the care of children with CP, while her research involves how physical therapy services are utilized, the use of measurement tools to treat CP, and novel CP interventions.

Dr. Bailes' eight grade photo shows her smiling broadly with a blue and black checkered shirt over a yellow turtle neck.

Dr. Bailes early exposure to young child with cerebral palsy while babysitting influenced her ultimate career choice.

Dr. Bailes has worked as a pediatric physical therapist for the better part of four decades, but it was during her teenage years that she was first exposed to CP. After agreeing to babysit for a neighborhood family whom she didn’t know well, she realized after a few evenings that the baby, a nine-month-old boy, seemed delayed. After bringing it up with the family, they confirmed her guess: the baby had severe CP due to an infection during pregnancy. The young Amy Bailes didn’t end up babysitting for the family for long, but the chance encounter led her to pursue a bachelor’s degree in physical therapy from Indiana University.
Dr. Bailes sitting on a rock in Sedona AZ with her husband and two daughters and a beautiful red and green landscape behind her.

Dr. Bailes decided early to combine her love of children, physical activity with her fascination with the brain.

“I became very interested in how the brain worked and controlled movement,” said Dr. Bailes. “I learned that as a physical therapist, I could combine my interest in the brain with my love for physical activity and children.”

Throughout her career, she has seen the field of physical therapy evolve dramatically, especially for children with CP: “We’ve learned so much about caring for children with CP. It’s really changed. And that’s been pretty exciting.” Within pediatrics, Dr. Bailes’ experience has been expansive. She has worked in acute inpatient care, inpatient rehabilitation, and outpatient care, as well.

Dr. Bailes is also quite interested in physical therapy dosing, which covers the frequency, intensity, duration, and timing of administering physical therapy to patients. A recent study that she co-authored in Pediatric Physical Therapy entitled, “Documenting Physical Therapy Dose for Individuals with Cerebral Palsy: A Quality Improvement Initiative” describes how quality improvement activities were used to increase documentation of therapy dose in the patient’s electronic record of physical therapy. Detailed dose documentation is important to help us understand what treatments are effective and for whom. Dr. Bailes is actively working to spread standard documentation methods to other medical centers so that vital information can be collated and used to inform current practice.

Dr. Bailes is also passionate about developing closer relationships between clinicians, patients with CP, and their families, about “sharing information with families that can empower them to care for their child,” in her words. Part of why transparency and information-sharing is important to Dr. Bailes is because the field has not always prioritized openness. When the Gross Motor Function Classification System (GMFCS) came into use, for example, it was common for clinicians to withhold a children’s classification from their family, on the basis that it might alarm them. This always struck Dr. Bailes as counterproductive: “It’s important—especially with a chronic condition like cerebral palsy—for the individual and the family to understand the condition. This information doesn’t really belong to us. It belongs to them.”

This is one of the reasons that Dr. Bailes initially became involved with the CP Research Network: “I like that CPRN is about breaking down barriers between researchers and families/individuals with CP to improve care and outcomes,” she said. Dr. Bailes is passionate not only about breaking down the barriers between professionals and families, but also between professionals in adjacent fields. The logic is straightforward: when specialists actively work together, everyone benefits. Strict separation between disciplines can be a problem in CP—information and context is inevitably lost as the patient bounces from one specialist to another—but Dr. Bailes is optimistic that things are moving in the right direction. Part of her optimism stems from the power of groups like the American Academy for Cerebral Palsy and Developmental Medicine and their willingness to collaborate and treat from an interdisciplinary perspective.

Dr. Amy Bailes with shoulder length brown hair, glasses smiling with a while shirt and blue jacket.

Dr. Bailes is the CP Research Network Quality Improvement coach work with different disciplines to rapidly improve care for people with CP.

Likewise with CPRN and its power to facilitate connections: “I have learned so much. I have become a better person, clinician, and researcher because of these relationships,” Dr. Bailes said. Currently, she coaches four quality improvement teams within CPRN. These four teams, respectively, are focused on:
  1. improving care for adults,
  2. improving the assessment of dystonia,
  3. improving hip surveillance, and
  4. decreasing intrathecal baclofen pump infections.

When asked what she most valued about her work, Dr. Bailes was already looking toward the future: “One of the most rewarding parts of my work is planting seeds for the next generation of researchers and clinicians to carry the work forward.”