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.”

The cover of the final program for the annual meeting of AACPDM with a picture of Las Vegas at night

Our Impact Grows: AACPDM Meeting

The cover of the final program for the annual meeting of AACPDM with a picture of Las Vegas at night

The final program of the annual meeting for the American Academy for Cerebral Palsy and Developmental Medicine in Las Vegas

Clinicians and researchers who focus on cerebral palsy (CP) gather in Las Vegas, Nevada, this week for the meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM). It is the first in-person meeting in three years, and the CP Research Network will be there in force. Our work will be spotlighted in three mini-symposia and three morning seminars, as well as one paper presentation and one scientific poster. All are geared toward spotlighting not only the results of our research, but also how engagement in our network can facilitate continued research and the implementation of evidence-based practices to improve outcomes for people with CP.

The mini symposia will be two hours in length total with a short discussion after. Topics include:

  • Building a Center of Excellence in Cerebral Palsy: Care Delivery Models Across Cerebral Palsy Research Network Sites – Laurie Glader, MD, a developmental pediatrician, CP Research Network Steering Committee member and Scientific Co-chair for the AACPDM meeting, will lead a presentation and discussion of different “models of care” from leading centers in the CP Research Network.
  • The State of Tone Management in Children with CP in North America: What Can We Learn from Each Other? CP Research Network investigator Sruthi Thomas, MD, PhD, is leading a session with other physicians from the network to discuss different strategies for tone management.
  • Using Quality Improvement (QI) to Change Systems and Improve Care in Cerebral Palsy – Amy Bailes, PT, PhD, and CP Research Network QI coach, will lead a discussion including clinical leaders and consumers about three of our active quality improvement initiatives including adult care, dystonia diagnosis, and hip surveillance.

Our morning seminars, each of which are one hour in length, include:

  • How to Participate in Multi-center Clinical Research and Quality Improvement (QI) with the CP Research Network
  • NINDS Cerebral Palsy Common Data Elements for Lower Extremity Orthopedic Interventions
  • Communication is a Gateway to Participation: State of the Science and Future Directions

And our free papers and posters include:

  • The Development and Sensibility Evaluation of the CPCHECKList© – A Comorbidity Index for Severe Cerebral Palsy and;
  • an Update from the Cerebral Palsy Research Network Registry.

These symposia, seminars, posters, and papers all seek to improve care and advance research at the national level. The breadth and depth of the network’s activities are very visible at this annual meeting and will draw new clinician researchers into our circle, eventually expanding our impact.

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.

Register now

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

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)?

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.

A middle aged woman with spastic quadriplegia smiles with blue eyes, strawberry blond hair and a black sweater.

CP Stories: Susan Picerno

Susan Picerno, a woman in her middle age with spastic quadriplegia, has led a few different professional lives. She has thrived in all of them. But the beginning of her career entailed the hiccups that driven, ambitious people with cerebral palsy come to expect. After graduating summa cum laude with a bachelor’s degree in social work, she decided to continue onto graduate school, obtaining a master’s in social work from the prestigious University of Michigan. Despite a graduate degree from what was the best social work program in the country, Susan recalls interviewing for twenty-two different positions before receiving an offer. For one interview, Susan recalled walking in with her crutches and being met with incredulity: “The director was so flabbergasted that I was disabled that he just stared at me, speechless. He had two directors with him, and they had to conduct the interview. He didn’t say a word the entire time,” said Susan.
She finally landed a part-time role with United Cerebral Palsy in Buffalo, New York, volunteering at a nearby center for independent living at the same time. From her volunteering, she became a board member, then an employee, and eventually, Director of Services. This was in the late ‘80s, not long before the passage of the Americans with Disabilities Act of 1990. The independent living movement was still relatively new at the time, and so Susan felt like her and colleagues at other, nearby centers for independent living were part of a movement that was growing and changing in real-time.

After her time at the center for independent living, Susan transitioned back into social work management for a while, pivoting again into grant writing for a time. At age 41, she shifted again, this time moving to D.C. to dedicate herself exclusively to federal disability policy. Susan had been working on disability issues for most of her career, but tackling the problem head-on at the federal level felt both meaningful and fulfilling.

But as Susan continued to advance and take on new challenges in her professional life, she could feel her spastic quadriplegia getting the best of her. She started developing secondary health issues common for people with cerebral palsy: obesity, type II diabetes, and hypertension. “I tried to exercise but I found physical therapy to be unsupportive,” Susan said. “I was supposed to exercise at home on my own, without the ability to stretch my own muscles and no adaptive exercise equipment or support from other people with disabilities. Why do physical therapists think that this situation will result in success?”

This is to say that for people with cerebral palsy who want to develop an exercise routine, the barriers to entry can be quite high. Pair these logistical difficulties with her harrowing experiences as a child in physical therapy—she describes being worked so hard by her abusive physical therapist that her lungs collapsed multiple times—and it’s clear that developing a regimen can present not only physical difficulties, but emotional ones. “Looking back [at my time in PT], I wonder: couldn’t they have put me in elbow pads, kneepads, etc. so that I didn’t injure myself?”

Despite these early experiences, Susan realized she was at a crossroads. Knowing what needed to be done but not sure how to make it work, Susan turned to the Lakeshore Foundation’s MENTOR program, which she was introduced to through her participation in the CP Research Network. The MENTOR program, which the CP Research Network is responsible for promoting to the CP community, helps develop wellness activities that participants can practice at home. Susan had a rocky start to the program—it was hard not to be discouraged about exercise, given her past with it—but eventually, the program became less about past struggles and more about self-improvement. Likewise, the ability to connect with other CP Research Network members who’d faced similar challenges was immensely rewarding. “These folks will always be my friends,” said Susan. She has since gone on to participate in another activity organized by the MENTOR creators, called the M2M study, which was a free exercise program tailored to people with disabilities.

Exercise was once a source of anxiety and disappointment for Susan, but now it’s a central part of her life. She consistently works out through her local adaptive fitness program, DPI Adaptive Fitness, which offers both in-person and virtual programming. One of the joys of virtual programming is the ability to participate in workout sessions that are “based” anywhere: one of Susan’s favorites is through the Bay Area Outreach and Recreation Program (BORP), which is based in San Francisco. “I work out about six hours a week now, and that includes boxing class, weight training, cardio. All kinds of activities.”

Susan recently retired from nearly two decades of service for the federal government, almost all of which were spent working for the U.S. Department of Labor’s Office of Disability Employment Policy. But in more ways than one, she continues to work to advance the causes of people with cerebral palsy. Advances in the fields of genetics and neurology represent possible breakthroughs for disability communities, but if used unwisely, these same technologies could greatly reduce the diverse ways in which human brains function (also known as “neurodiversity”). Thanks in part to the connections she has made through the CP Research Network, Susan has continued to organize and educate about this topic, engaging with both activists and scientists alike: “As people with cerebral palsy, we need to step forward and speak decisively for our own community,” Susan said. “And we need to educate parents, medical professionals, and the general public about our disabilities.” Likewise, she also recently started Little Tiger Productions, a platform that seeks to amplify creative work by and about people with disabilities. “There are so few stories that are written with disabled people in mind. Characters that do have disabilities often exist to make a point,” she said. Tiger Talk, a Substack newsletter dedicated to just this topic, is set to publish soon.