Resources for adults with cerebral palsy, such as research and educational presentations, plus an interactive forum you can join today!

 

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!

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. Laurie Glader, Director of the Cerebral Palsy Program at Nationwide Children's, with shoulder length blond hair smiling.

Research CP: Progress Report

Next Wednesday, September 14th, Dr. Laurie Glader will lead a MyCP webinar updating participants on the progress of our patient-centered research agenda established in 2017 through our Research CP program. Research CP was run by the Network with the goal of setting a patient-centered research agenda for CP. It was funded by the Patient-Centered Outcomes Research Institute. The program included a webinar series, a collaborative agenda setting and prioritization process, and concluded with an in-person workshop in Chicago in June 2017. The results of this process, published in 2018 in Developmental Medicine and Child Neurology, can be found on our website. Since that time, the CP Research Network has used the findings from Research CP to guide our research investments and study development.

This webinar will allow the CP community to see the progress that the Network and the creation of the cerebral palsy registry have had on advancing the pace of CP research and answering the questions about CP that were raised through the Research CP program.

After the presentation, Dr. Glader, a developmental pediatrician who directs the CP program at Nationwide Children’s Hospital in Columbus, Ohio and is a member of the CP Research Network Steering Committee, will be available to answer questions from the community about current and future CP research network projects.

The webinar is free and will be recorded for people who cannot attend. Please join us for the presentation and discussion at 8 pm Eastern Time via Zoom. The presentation is open to the public and will have content that is meaningful to community members of all ages, clinician researchers and companies serving the CP community. You may register to receive an invitation to the webinar or a notification of when we post the recording.

Three headshots of Cerebral Palsy researchers Aravamuthan, Kruer and Gross

CPRN Investigators To Speak at NIH Cerebral Palsy Workshop

The banner for the NIH meeting on the state of cerebral palsy research with a graphic of a brainThe National Institutes of Health (NIH) are hosting a virtual public workshop on the state of cerebral palsy (CP) research starting next Wednesday, August 17 and August 18 that features three investigators from the CP Research Network. The meeting has been organized in response to Congressional requests to provide an update on the NIH Strategic Plan for Cerebral Palsy which was published in 2017 following two CP workshops held in 2014 and 2016. The organizers describe the purpose of the meeting as “to provide a forum for researchers, clinicians, and people with or affected by cerebral palsy to share updates on research progress and new opportunities since the publication of the Strategic Plan.” The CP Research Network encourages interested members of our community to register and join the online meeting.

The meeting is organized to follow the three priorities of the strategic plan starting with basic and translational research, and then clinical research and ending with workforce development. Drs Aravamuthan and Kruer, funded by NIH for their work in CP, will provide updates on their research progress on Day 1. Both are movement disorders neurologists with Dr. Aravamuthan specializing in dystonia in CP and Dr. Kruer on the genetic causes of CP. CP Research Network Chief Executive, Paul Gross, will speak on the use of CP Registries in research on Day 2. Each day will include between 40 and 80 minutes of discussion moderated by NIH staff. This meeting will include discussions of research progress and needs across the lifespan from neonatal development to adults with CP.

CP Stories: Duncan Wyeth shown in a grey jacket with silver hair introducing Sheryl Hine.

CP Stories: For Paralympian Duncan Wyeth, It All Began with a Red Schwinn

A young Duncan Wyeth with curly hair, a dark blue suit and red tie speaking into a microphone.

Duncan on the Paralympic Committee and as an executive at United Cerebral Palsy.

If you subscribe to the idea that the baby boomer generation officially started in 1946, then Duncan Wyeth was truly one of the first—he was born in March of that year, just thirteen months after his father had come home from World War II, wounded during the Battle of Anzio. At a hefty 10 pounds 6 ounces, Duncan was by no means a preemie, as is common for people with cerebral palsy (CP(. But the birth itself was complicated, and the labor lasted for thirty-six hours. “It’s not surprising that I experienced a lack of oxygen,” Duncan joked, as we spoke over Zoom.

And so when baby Duncan started falling behind on common developmental milestones, this, too, was unsurprising. A few months after Duncan’s first birthday, his parents, Barbara and Irving, took him to a clinic in Detroit, roughly 100 miles from where they were living in Lansing, Michigan, where Duncan’s father was attending Michigan State on the G.I. Bill.

In addition to a formal diagnosis of CP, Irving and Barbara also received a sobering prognosis: they were told that he would never walk, would have an intellectual disability, and would probably be dead by forty. The doctors, in short, told them to place Duncan in an institution and go have another baby. “In 1947, that was not a cruel, uneducated prognosis,” Duncan said. While Duncan’s parents quickly came to terms with the diagnosis, they were, to their credit, skeptical of the prognosis the doctors had offered. This skepticism was arguably the first of several major decisions Barbara and Irving made well. In the words of Duncan: “I’ve always said that the most important lesson in life is ‘choose your parents well,’ and I had the foresight to do that.”

Cerebral Palsy was still poorly understood at the time—United Cerebral Palsy wouldn’t be founded until a couple years later, in 1949—but as Duncan neared school age, his parents were proactive in getting him the physical therapy and the pre-K social skills he needed. They also, crucially, allowed Duncan to be a kid, to take risks. “My parents not only allowed me to go outside my comfort zone, they encouraged it,” he said.

In kindergarten, they made another major decision that would pay dividends: they bought him a bicycle. At first, the bike served a pragmatic function. “I would never have been able to keep up with my playmates, go to the local playground, etc. if I hadn’t been given that bike. It really provided me with the mobility to get around.” Duncan needed training wheels, but he was unconcerned. The bike was, in his words, the “great equalizer.”

In second grade, though, Duncan received an upgrade: a beautiful bright red Schwinn with a small, battery-operated horn. That summer, he made sure the bike was well-loved: “I rode that thing constantly, everywhere. Whether I needed to or not.” At the time, summer was something of a double-edged sword for children with CP. It meant freedom, yes, but most children received their physical therapy primarily through the public school system which, of course, was on break in the summer. If a child wasn’t receiving private physical therapy, then summer usually meant a step backward. Some of the progress made during the school year would inevitably be lost.

But when Duncan returned to school in the fall of third grade, his doctor was confused. “Duncan isn’t up on his toes as much when he’s walking,” the doctor said to Duncan’s mother. “You’ve found some way for him to have physical therapy in the summer, I’m guessing?”

“Well, no, I wonder what’s different,” said Barbara. “This spring he got a new bicycle, but that’s the only thing I can think of.”

Unlike most children with CP, Duncan’s condition had actually improved over the summer—he was notably less spastic, ostensibly because of all the exercise he had been getting on his bike. This Schwinn would mark the beginning of a lifelong love: “The cycling was physical therapy, but it wasn’t physical therapy that required a licensed therapist or insurance coverage. And I liked it. I was doing something.”

Duncan’s parents gave him the Schwinn for the same reason any parent would do so, but it’s hard to overestimate how radical the decision was at the time. Measured, supervised physical therapy was slowly becoming a part of any CP regimen, but common exercise—working up a sweat while riding a bike up the nearby hill, say—was thought to be harmful to the overall health of a person with CP. “Exercise was contraindicated, because the belief was the stress would exacerbate my spasticity,” Duncan explained. In this regard, Duncan’s parents were almost a half-century ahead of the research.

Duncan Wyeth sits on a sand beach facing lake Superior in a blue USA jacket with his bicycle.

From second grade on, cycling has been a key part of Duncan’s life even at 76 years of age.

To say that cycling became a hobby for Duncan would be an understatement. He would continue to cycle in high school—roaming through the streets of Taipei, where he lived for two years while his dad taught at National Taiwan University—and then through his university years as well, first at Alma College and then at Michigan State, just like his father. In his twenties, Duncan joined a touring bike club, participating in weekly rides, including century rides. Not until his thirties did he begin to seriously compete in disability sports, receiving one gold medal and two silver medals in the National Cerebral Palsy games. A few years later, he would compete internationally—first at the international Cerebral Palsy Games, where he was the first American to receive a cycling medal. At the 1988 Paralympic Games in Seoul, he placed fifth out of more than forty competitors. This marked the beginning of his work with the Paralympics, which lasted several decades: in ‘92 in Barcelona he served as a cycling coach and member of the leadership team, and then at the Atlanta Paralympics in ’96 as the prestigious “chef de mission” for the U.S. Paralympics team.

During this time, he also served as the voting representative for athletes with disabilities on the United States Olympic Committee for two Olympic cycles of four years each. In ’97, he was elected to the International Paralympic Committee (IPC) and would later become the vice president. In 2000, the American Academy for Cerebral Palsy and Developmental Medicine established the Duncan Wyeth Award, which annually recognizes an individual who has made significant contributions to sport and recreation for persons with disabilities. While Duncan stopped competing around this time, he still cycles on a regular basis. “I am convinced that at age seventy-six, I am still as mobile and as active as I am in large part because of a physically active, sporting lifestyle.”

Duncan Wyeth in a bright red USA check and blue helmet sits in his recumbent trike smiling.

Duncan Wyeth has not only been the recipient of several awards and medals, he also has had an award named after him by the American Academy for Cerebral Palsy and Developmental Medicine.

Duncan is retired now, or as he likes to call it, “unemployed by choice.” But he has chosen to stay involved with the CP and disability community more broadly for many reasons. To understand one such reason, we need to briefly return to Duncan’s eighth-grade English class. His teacher, Mr. Porter, was a friendly, charismatic man who had become disabled after contracting polio as a child. “Mr. Porter was the first professional disabled adult I’d ever encountered, and therefore my first significant role model,” Duncan said. His teacher was proof that it was possible for a person with disabilities to have a fulfilling, ambitious professional life. For many young people with disabilities, they either never meet that adult role model or do so too late. Throughout his adult life, Duncan has taught and presented at schools with abled and disabled students alike in the hopes that he might serve as an example of what is possible. These exchanges need not be particularly complex: it is enough, in Duncan’s words, to enable a young disabled student to realize, “I can do that.”

He has also chosen to stay involved with organizations like United Cerebral Palsy (UCP) and the Cerebral Palsy Research Network (CPRN) to ensure that others have access to sorely needed resources and support systems. The types of resources that CPRN offers are largely in-step with the research, but Duncan particularly appreciates that they reflect what people with CP actually want. “One of the reasons I’ve been impressed by CPRN is their real desire to listen to the consumer voice and input so that programs and services are consumer-focused,” he said. To this end, Duncan also appreciates the close relationship between the community and its members: “There’s always research going on, all kinds of surveys that people with CP can participate in. They can contribute to a knowledge base that’s really going to move the needle.”

Duncan has done a fair amount of moving the needle himself, consistently pushing his limits and defying expectations. But he was resolute that his accomplishments wouldn’t have been possible without the support he’s received: empowering, passionate parents; the opportunity to pursue a college education; the chance to travel the world and represent his country; years of engagement in meaningful employment. “I am where I am today because of all the steppingstones I’ve had along the way,” he said. “The economic security, rich and varied learning opportunities, wise and caring mentors, and a personal commitment to progress. If I hadn’t acquired over the years the skillset needed to navigate an unfriendly system, there’s no way in hell I’d be who I am in 2022.”

Grip Study Results: MyCP Webinar

The hand of a man, wearing a grey suit, grasping a grip strength measurement device.

The hand of a man, wearing a grey suit, grasping a grip strength measurement device.

On Monday, June 20 at 8 pm ET, Ed Hurvitz, MD, will present the preliminary findings of his study of grip strength as biomarker for body composition in cerebral palsy (CP). This presentation will appeal to all adults with CP and parents/caregivers alike because of the importance of understanding the role of body composition to lifelong health in CP and risks it may present to members of our community. Dr. Hurvitz is the chair of Physical Medicine and Rehabilitation at the University of Michigan and a leading researcher into challenges that people with CP face as they age.

Dr. Hurvitz, with a close cropped beard, salt and pepper hair, wearing a dark suit, white shirt, blue tie and rimless glasses

Dr. Ed Hurvitz will present the findings from his pilot study on Grip Strength

Dr. Hurvitz was the subject of last week’s CP Stories blog post that spotlights members of the extended CP community for their role in championing research either as a passionate adult with CP or caregiver or as a clinician/researcher committed to improving health outcomes for people with CP. He leads a group of researchers at the University of Michigan that study a number of health and fitness related outcomes for adults with CP. He is also a member of the CP Research Steering Committee and chairs its Adult Study Group.

The Grip Study pilot received funding from the Foundation of Physical Medicine and Rehabilitation in October 2020. In Monday’s MyCP webinar, Dr. Hurvitz will present that rationale for the study, the findings from the pilot study conducted at the University of Michigan and his plans to expand the study within the CP Research Network to validate its findings in a multi-center context. The presentation will be followed by an open Q&A. People interested in watching the webinar can sign-up on the MyCP Webinar Series page to receive the webinar link. If you have registered for the MyCP webinar series, there is no need to register again. The link will be emailed to you prior to the start of the webinar. Join us!

Dr. Hurvitz, with a close cropped beard, salt and pepper hair, wearing a dark suit, white shirt, blue tie and rimless glasses

CP Stories: Edward A. Hurvitz, MD

Dr. Hurvitz, with a close cropped beard, salt and pepper hair, wearing a dark suit, white shirt, blue tie and rimless glasses

Dr. Ed Hurvitz is a member of the CP Research Network Steering Committee and the chair of the network Adult Study Group.

Dr. Edward A. Hurvitz is Chair of the Department of Physical Medicine and Rehabilitation (PM&R) at the University of Michigan Medical School. He is a physiatrist by training, specializing in pediatric rehabilitation medicine. But as the children he worked with grew up, he became increasingly focused on adults with childhood-onset disabilities, particularly cerebral palsy (CP). This shift was based largely on the needs of his patients: “For my adult population, the most motivating factor is the great need for someone who has knowledge and interest in their care,” said Dr. Hurvitz. The CP-related research he has been involved with is expansive: over the years, the Michigan Adults with Pediatric Onset Disability team has published research on pain and pain treatment, bone health, renal disease, mental health, cardiovascular health, body composition, and the diagnosis of these chronic diseases.

Although Dr. Hurvitz has remained active as a researcher throughout a career spanning more than three decades, he has also served as a sort of advocate, working to get a younger generation of doctors and researchers interested in CP. He mentioned that the CP Research Network has been helpful in this regard: “[Working with the CP Research Network] has given me the chance to interact with young faculty and try to bring them in more to the world of CP research, along with giving them the tools to do it,” Dr. Hurvitz explained.

The rationale here is that if there is growth in the amount of researchers dedicated to CP, funding devoted to CP will likewise increase. Ideally, Dr. Hurvitz explained, all major medical centers that train early-career researchers would have CP-related programs. If the National Institutes of Health and other grantmaking agencies were, in Dr. Hurvitz’s words, “flooded with high quality grants related to CP,” research would increase exponentially. Specific areas that Dr. Hurvitz would like to see an increased focus on include research that engages with the International Classification of Functioning (ICF), which would entail finding interventions to improve overall health for people with CP and developing ways to increase their participation in vocational and recreational activities.

Likewise, because so many people with CP depend on their primary care physicians to correctly diagnose secondary health issues and make the appropriate referrals, Hurvitz also sees increased focus on education about CP as a vital step. “I would do more to teach primary care physicians about what we are learning about preventive care for people with cerebral palsy,” said Dr. Hurvitz. As telemedicine continues to grow, Dr. Hurvitz is optimistic about its potential to connect people with CP to specialists all over the country: “Telemedicine has great potential to allow health care providers knowledgeable about adults with CP to provide care and partner with providers in the individual’s local area. CPRN is working on a project to better identify these needs and provide education to people with CP about the importance of finding a knowledgeable provider,” In this same vein, he also considers it important to provide individuals with CP and their families with the tools to navigate health care and social service systems that are often ill-equipped to handle their needs.

Sorely needed investment in public infrastructure—increases in the frequency and reliability of public transportation, self-driving vehicles, and personal robotics aid devices, for example—also stands to benefit adults with CP. Additionally, investments in technology—voice-activated software, communication devices, and learning platforms tailored to children with learning disabilities—will also likely improve the day-to-day lives of people with CP.

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for Dr. Hurvitz’s webinar on Grip Strength and Body Composition on Monday, June 20 at 8 pm ET

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Dr. Hurvitz continues to cover a wide range of CP-related health issues in his clinical research. He’s currently leading a project that would introduce handgrip strength as a measure of risk for chronic disease, and the Michigan team is also actively looking into better ways to assess the risk of fractures and renal disease (and screen for them, as well). Research aside, Dr. Hurvitz remains an active and passionate clinician. “One of the things I find in talking to adults with CP is that they just greatly appreciate the information, and they really feel like so few people are able to provide it.” Public knowledge is still catching up to the recent uptick in research, and so Dr. Hurvitz sees information dissemination and the growth of the CP health care provider/researcher community as a crucial factor in getting people with CP the treatment they need.

There is, of course, no magic treatment for CP, but Dr. Hurvitz’s outlook remains optimistic because of how the CP community and CP infrastructure have grown in recent years. “CPRN provides the tools to improve care, increase clinical research at significantly reduced cost (once the infrastructure is in place), improve clinical education…and more,” Dr. Hurvitz said.

Much of the research that Dr. Hurvitz and his peers have produced in recent years does suggest that CP is treatable, that physical interventions can dramatically increase quality of life and decrease the severity and frequency of secondary health issues. This is another reason for Dr. Hurvitz’s optimism. Recounting a patient whose life improved after being treated for a secondary health issue that was plaguing her, Dr. Hurvitz said, “I like to say that I can cure cerebral palsy—a little bit at a time. I can’t cure all of it, but I can cure some of it.” He feels that the more we know about CP, the more we can cure. The CP Research Network will continue to play a vital role in continued efforts to better understand CP.