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The Shrader children -- triplets to the right with sister Cate on the left.

Preparing for College – Part 3

Carol Shrader, mother of four, two of whom have cerebral palsy.

In the third installment of her inspiring story, CP and triplet mom Carol Shrader shares how she watched her son Benjamin, who has spastic quadriplegia, flourish during his college years…

The night before my son Benjamin began his freshman year, I could not sleep. I worried all night long.

“I know, right?” my husband Wade consoled, observing my nervous disposition. “I have been thinking about this day for 18 years!”

Benjamin, our triplet with spastic quadriplegia, lived at home with us and his younger sister Cate for the first three years of college, but getting around campus independently was still a big deal.

He was only a week and a half into the first semester when we hit our first snag. Benjamin was heading across campus in his wheelchair with a fellow student and following her lead. When she pointed at the curb where they needed to cross the street and asked him if he could make it, he assumed it was flat. Unfortunately, his depth-perception issues prevented him from knowing for sure. It wasn’t flat. He drove right off the curb.

His professor called me, and I rushed to the campus to find my shaken son, clearly in pain and surrounded by college kids, security, and the head of the theatre department. The footplates on his wheelchair were the only thing that prevented him from landing on his face. His feet still took the brunt of the 300-pound weight of him and his wheelchair.

I have never wanted to jerk back control of a situation more – and it was clear I needed to.

Quickly rearranging my schedule, I ensured I could be on campus the rest of the school year. I assisted between classes, shuttling Benjamin between the upper campus and the lower campus where theatre classes were held. I brought him lunch. I took care of his toileting needs. I brought him back to campus for late night events and drove him wherever he needed to go, ensuring he could fulfill his college kid schedule.

At the same time, I worked to find ways to help him achieve independence. I began by phoning the ADA compliance officer and asking for the sidewalks to be revamped on campus. They needed ramps so Benjamin could navigate them safely. When the ramps were consistently blocked by mail delivery vehicles, maintenance, and even professors, I called the dean.

With problems still arising, I called the university president and, in my sweetest Mama Bear voice, told him that Benjamin could not succeed at his college if he could not ever get into the classrooms. A few weeks later, every ramp on campus had been repainted with the words “DO NOT BLOCK” in bold letters.

Meanwhile, Benjamin worked with the ADA office to secure a scribe for tests. The professors assigned a student to copy their notes for him. I was his scribe at home for each assignment. We even burned the midnight oil together, working on a 24-hour theatre assignment to write a play overnight so his team could memorize lines and perform them the next day. Poor Benjamin had to dictate to a scribe who fell asleep between lines.

The triplet’s freshman year continued to be a long year of learning for all of us. Mason was doing well, living a relatively independent life on campus at his college. Claire, my triplet without cerebral palsy, had moved onto campus about half an hour from our home. Throughout her four years, she called, texted, and sent video messages. Sometimes she would share a funny story about life on campus; sometimes, she just needed her mom and emotional support.

When April arrived, I noticed a shift in Benjamin. During a course selection meeting with his advisor, he took an assertive new tone.

“I need to arrange my schedule so that I am at the upper campus for three days a week and the theatre campus for two days a week or vice versa,” he said. “I need for my mom to be able to leave me on campus.”

By the time Benjamin began his sophomore year, he had a personal care team trained to assist him. Having a personal care attendant meant he could be independent of me and could organize his study time, extra-curricular activities, and classes the way he wanted. By his senior year, Benjamin felt confident to move into a newly built dorm with accessible units. It was an enormous step.

Initially, Benjamin didn’t love staying in the dorm, but he grew to enjoy his independence. It was empowering for him to be in charge of his schedule, meals, and life. The accessible dorm and the ultimate willingness of the college administration gave him this opportunity. He had a great college experience participating in theatrical productions as both an actor and a dramaturg and was elected to homecoming court twice in four years.

Benjamin Shrader in his second round of being elected to the Homecoming chord.

Benjamin Shrader at a college graduation celebration.

Benjamin graduated Magna Cum Laude with a major in dramatic writing and a minor in political science. When he presented his final script as a read-through performance for his senior project, every single one of his team of PCAs was in the audience because they were so invested in him.

His brother Mason was recently accepted to his second Master’s program in Anthropology, focusing on Bio Archaeology at Texas Tech. Claire is currently in her second semester of Occupational Therapy School at Thomas Jefferson University in Philadelphia.

Claire enjoyed a semester studying abroad in Argentina and founded sibling workshops for the brothers and sisters of differently-abled children worldwide. When she got an internship with an autism foundation, she discovered they had nothing for siblings, so she created a program. She went on to graduate Magna Cum Laude with a major in Spanish, a minor in English, and all her pre-occupational therapy courses.

When I reflect on the triplets’ journey, I would like to call the educators who didn’t want to invest in their potential. I want them to know that those little preschoolers they thought would place an undue burden on their teachers graduated with honors – lots and lots of honors.

I would like to tell them that when Benjamin rolled across the stage with his diploma, the faculty were the first to stand in what turned into a standing ovation throughout the graduation hall. Those faculty did not stand because Benjamin had been a burden on their teaching. They stood because he worked hard in their classes, he engaged on a day-to-day basis, he encouraged his fellow students, and set the bar high for their performance.

I would like to show them photos of Mason digging in the ancient acropolis in Majorca and receiving his hood for his thesis. I want them to read his undergraduate thesis on disability in the ancient world. I want them to know that his honors project won the Phi Beta Kappa award for best honors project at his school. They missed the chance to list this amazing Summa Cum Laude graduate and all of his accolades among their alumni.

The Shrader children -- triplets to the right with sister Cate on the left.

The Shrader children — triplets to the right with sister Cate on the left.

They also don’t get to brag about our soon-to-be Occupational Therapist Claire who is already changing the world for young people with CP and their families.

College looked different for each of my three. But they each found the school that matched their needs, the path that worked for their personal dreams, and made it not just a possibility but a reality.

College IS possible for young people with CP. They can make their mark and change the world. They can recolor the way society views students with CP. They can affect change. They CAN succeed.

Dr. Unni Narayanan, orthopedic surgeon

CP Stories: Hospital for Sick Children Surgeon Unni Narayanan

There is so much more society can do to allow people with disabilities to live fuller lives.
Unni Narayanan, MBBS, MSc, FRCS(C)
Unni Narayanan, MD

Unni Narayanan, MBBS, MSc, FRCS(C)

As one of the top pediatric orthopedic surgeons in his field, Unni Narayanan is passionate about improving mobility and reducing pain for the young patients in his care, many of whom are children with cerebral palsy.

But his dedication doesn’t end there. With a background in clinical epidemiology, the renowned doctor is also carrying out research to identify which treatments work best and understand and define the priorities of patients and their parents.

“I see, treat, and operate on children with CP every week, and a major focus of my work is dedicated to children with CP – it’s almost a subspecialty area in pediatric orthopedics,” says Narayanan. “CP children have a variety of musculoskeletal impairments which can impact how they move or walk. At the more severe end, you have children in wheelchairs and with musculoskeletal impairments that can cause them considerable pain. They can need all kinds of operations to optimize their efficiency. My clinical research is focused on understanding patient priorities and using that to improve outcomes.”

Narayanan, who completed his residency in orthopaedic surgery at the University of Minnesota and his fellowship in pediatric orthopaedics at The Hospital for Sick Children (Sickkids), is a senior scientist at the Sickkids Research Institute, and has spent two decades working in the field. He says his background in clinical epidemiology led him to focus on improving outcomes through clinical research and surgery.

His PSCORE [Priority-Based Scales For Children’s Outcomes – Research & Evaluation] Program at SickKids invites parents and patients to share what is important to them so clinicians can make judgments about whether treatments make a difference.

“We compile evidence to support whether interventions improve the lives of kids and carry out clinical trials to see which treatments work and which work better than others,” he explains. “A major focus is developing measures of those outcomes.”

Narayanan has been involved with the CP Research Network for many years and is a member of our executive board. He was on a sabbatical in the United Kingdom when he first heard about a large research project organized by the network and has contributed ever since.

“One of the network’s first major initiatives was to bring together clinicians from different subspecialty groups and charge them to work together to develop the core outcomes,” he recalls. “I led the orthopedic part of that effort and worked with my colleagues in other disciplines to bring elements together. It was the start of a clinical registry across North America. I continue to be involved in that effort.”

He cites CPRN.org as an essential resource for ensuring multiple institutions can collaborate to use electronic health records to collect data in a structured and standardized way.

“Integrating research into clinical care is the way to go,” he says. “You are collecting data not just in one but in many institutions, which allows you to collate a higher quality of data efficiently. That’s the power a network like CPRN can facilitate.”

As he contemplates what the future of CP treatment looks like, Narayanan says he would like to see advances in preventing the condition before it can occur and that research requires time and resources.

“CP, unfortunately, is permanent. There is no cure. The damage to the brain while developing is irreversible. The Holy grail would be to reverse that,” he says. “The biggest advances being made are the substantial efforts to prevent the damage in the first place. For example, looking at babies that are at high risk and understanding how the brain works. They are the biggest advances. As an orthopedic surgeon, that is far from what I do. I am downstream of the consequences. Advances in prevention require a more sophisticated understanding of the causes.

“Having time dedicated for research is critical. As a surgeon, clinical responsibilities creep into that time. We also rely on grant money. Those dollars are hard to come by. Nether-the-less, I am very fortunate to be where I am. I have an institution that embraces research and values it.”

There is one thing Narayanan believes we could all do right now to improve the quality of life for people with CP – focus on intersectionality in our daily lives.

“While we wait for medical advances, there is so much more society can do to allow people with disabilities to live fuller lives without needing to fix them,” he says. “It’s not so much treating the child but treating society – empowering people with disabilities to allow them to live fuller lives. By adapting the environment to help people with disabilities get around more easily, you create more comfortable, fuller lives for them. You don’t need sophisticated research to do that.”

Mason Shrader on an archeological dig in Spain

Preparing for College – Part 2

Carol Shrader, mother of four, two of whom have cerebral palsy.

[In the second installment of her moving three-part story, triplet and CP mom Carol Shrader describes her son Mason’s experience of finding independence as he left home for college for the very first time.]

When you’re a mama bear who has raised four children with very different needs, it’s instinctive to be a helicopter parent. But as I stood on the sidelines watching a college administrator empower my son Mason, I knew the time had come to take a backseat.

“Mason, I’ve heard what your mom thinks you need,” he remarked. “What support do YOU think you need to be successful?”

He may not have made my list of favorite people right then but, as Mason replied with his thoughts, I recognized he was encouraging my son to take charge and have a voice in his own support structure. He was also empowering me to hand over the controls. I could tell by Mason’s face that he was happy. I knew this was the place for him.

Mason was born with spastic diplegic CP, and while he is physically more independent than his brother Benjamin, who has spastic quadriplegia, he has a longer list of medical issues.

When my triplets’ college years arrived, our first hurdle was to find the proper support for our sons to sit for their SATs. I spent hours finding a test site that provided the accessible space we needed for the boys and would allow for scribes to help them write their answers. I filled out multiple forms to ensure the scribes would be permitted and assembled the required medical documentation.

With all the approvals in place, the first test date approached. But even with the best-laid plans, there were obstacles we could not anticipate. My trio was as prepared as I could help them be. They were ready. Then the school called the day before the exam. The scribes had decided they didn’t want to work that Saturday, and the school could not replace them. They would “try” to hire someone for the next test date. Claire took it that day, but Benjamin and Mason had to reschedule. They ended up taking the SAT twice and gained good scores. The relief would carry us through the college application process and all that it entailed.

Our college wish list consisted of schools with excellent access, a manageable student population, and programs of interest. We visited campuses all over the country. We toured schools in Philadelphia, Minneapolis, Chicago, and their more expansive geographic areas, and checked out small liberal arts colleges in California, Mississippi, and Arizona.

We saw great colleges with insufficient access and colleges with excellent access but seemingly a million students. In the end, all three of my triplets chose small liberal arts colleges that offered them an intimate learning environment.

Once Mason had secured his favorite college choice, I helped him put everything we thought he needed in place to live independently. While his campus was only 15 miles from our home, we had made a cross-country move just a few weeks before college started. We had to find Mason doctors to manage his cerebral palsy and his related high blood pressure caused by problems with one of his kidneys, as well as his ulcerative colitis. I had equipped him to talk to doctors himself, but I had failed to teach him to talk to pharmacists. We would have more than one tense mother and son discussion about refilling meds BEFORE they ran out. Equipping him to call in his prescription refills in time and pick them up before he missed a dose was a skill I had overlooked as I prepped him for college. The truth is you can’t predict everything, and you will always be problem-solving on the go.

Mason navigated campus with an electric scooter and his power sticks. Like most moms sending her first born to college, I worried a lot and followed all the campus social media, hoping to get a glimpse of him without nagging him to send me photos.

I was nervous about the electric scooter he took to navigate campus. What if it had negative connotations for him? There was no need to worry. It didn’t. When he joined a fraternity, the president made a point of climbing on the back of Mason’s scooter with the official flag. “We’re going in last!” the president enthused. Staff and students together nicknamed that scooter and were disappointed when rain the weekend of graduation prevented “Bocephus” from attending the swiftly organized indoor ceremony.

Mason threw himself into campus life, serving his fellow students as a resident assistant in the dorms. He was elected student body senator.

When Mason called home his needs varied from emotional to physical, to help with an essential decision like which bow tie matched which shirt. My personal favorite phone call was when he needed me to stop by campus to button the little tiny buttons on his dress shirt.

Mason’s college was not perfect from an accessibility standpoint – the sidewalks were in a deteriorated state, and navigating them in the scooter could be hazardous. The beautiful old buildings had elevators that broke down and didn’t work almost as often as they worked, but the administrators were committed to Mason and his needs.

Mason Shrader on an archeological dig in SpainThe professors recognized his abilities far exceeded his limitations and worked to maximize his opportunities. He thrived, even studying abroad on archaeological digs in the Yucatan of Mexico and off the coast of Barcelona, Spain. Mason worked hard and he had chosen a school with the heart necessary for his success.

He graduated Summa Cum Laude in four years with a major in Classics (Greek and Latin), a major in Anthropology, and a minor in Archaeology. His picture hangs on the wall of the student center as one of just four students in his graduating class chosen for the Hall of Fame. Mason earned this accolade because he took the heart his school poured into him and gave it back with dedication.

Today, Mason is finishing up a Master’s in Classics at Texas Tech University. Before the pandemic, he was living alone, on campus a thousand miles from home.

Whatever the problem, Mason has taken it in his stride. Despite living independently, fine motor skills are challenging, but we work out the solutions.

When he started to look like a hairy mountain man with unkempt hair, beard, and nails, we organized a reconnaissance day sending him on Uber rides around the city to find somewhere he could get his hair and beard cut plus a manicure and pedicure. Now Mason knows exactly which strip mall can serve all those needs and heads there every six weeks.

Mason has CP which has thrown some curveballs his way over the course of his life. But when he lectures, cerebral palsy is the last thing on his students’ minds. Recently, I had the opportunity to speak alongside Mason to a class of students working on their masters in special education. We were in fact, lecturing about CP and the impact these students would have as teachers. But when Mason started speaking about his archaeological research, the entire discussion shifted and the previously quiet class began raising their hands to ask questions. Even they, who were there specifically to discuss CP, had completely forgotten that Mason is affected by this challenge.

I can’t help beaming with pride.

(For more information on preparing for college, visit this resource developed by Carol Shrader from her experiences.)

Kristie Bjornson, PT, PhD

CP Stories: Researcher and PT Kristie Bjornson

“Physical Therapists need to know the tools to use to help children with CP”Kristie Bjornson, PT, PhD

Family ties and adversity sent physical therapist and well-established researcher Kristie Bjornson on her path to improving strength training for children with cerebral palsy.

Kristie Bjornson was in middle school when her older brother Keith endured a severe spinal cord injury after a diving accident. Helping him ignited her initial passion for physical therapy.

But it was her brother’s wife, Sherry, who has Spastic Diplegia CP, who opened her eyes to the challenges of the CP community.  Bjornson was drawn to learn more, and during her PT training in St. Paul, Minnesota, she began an internship working with children with cerebral palsy. It was the start of a 20-year career working with children with CP.

In 2000, Bjornson decided to go back to graduate school to expand her knowledge further.

“I realized physical therapists didn’t have enough research to know what tools to use in the toolbox to help children with CP,” she told CPRN. “I am a much more evidence-based clinician today. Presently, I have National Institutes for Health funding for three trials exploring varying treatments to help children with CP walk and move about the world easier.”

Bjornson is based at Seattle Children’s Hospital & Research Institute, where she is Associate Professor of Pediatrics and Rehabilitation Medicine, appointed by the University of Washington. She spends one day a week working as a physical therapist, and the other four days are spent on her research projects at the Research Institute.

The goal of her research is to maximize how efficiently a person with CP can walk. Her first project, a two-year study on orthotics, focused on researching the best orthotics and shoe combinations. The second project is a five-year study, a home-based program for elementary school children aged four to six, which is now in its third year.

The study of 72 children involves a standard treadmill being set up in each child’s home with a therapist overseeing forty sessions of treadmill training over eight to ten weeks. The study compares two different types of treadmill exercise: traditional vs. short burst interval.

During the traditional treadmill sessions, children walk at a steady pace for thirty minutes, with speed increasing a little each time. During the short burst interval training, the child walks at a comfortable pace for thirty seconds and then begins alternating with walking faster for thirty-second bursts (fast, slow, fast, slow). Pilot project data shows the latter technique to be more beneficial in helping children with CP walk better.

Total Gym

Bjornson’s third project has just entered its fourth year and features middle grade and high school-aged children and teenagers. The five-year study uses a piece of equipment called a “Total Gym” system.

This study compares strength training with a traditional steady-paced method to power training using the short burst interval method. Pilot data shows the power training combined with short burst interval treadmill training to help this age group walk better.

As her work continues, Bjornson says she would like to see more clinicians use evidence-based practice and a national electronic health record established. She believes these two things would make it easier for researchers to contact people with CP, their parents, or caregivers to improve treatment and research rather than the current model, which the provider controls.

“Doing research with persons with CP is not black and white because no two people present exactly the same way,” she explains. “We’re beginning to chip away at the iceberg we can see above the water.”

As an active member of the CP Research Network, Bjornson says she appreciates how the network has brought persons with CP, parents, and caregivers to the table with providers and researchers for the first time.

“The honestly and resilience of the children and families I get to work with is why I feel so fortunate to do this work,” she adds. “They are just amazing and have taught me so much. They are the reason I chose to pursue my research training after practicing for many years.”

CP Story Ethan Lopez

CP Stories: Brittany Lopez

“Ethan knows he’s different and he’s really happy and content.”


Toddler Ethan Lopez was diagnosed with spastic quadriplegia cerebral palsy (CP) and dystonia at the age of two. Today, his mother Brittany, 31, shares her joy at seeing her son take everything in his stride…

Just like many parents with a young child, Brittany Lopez, and her husband Esteban, juggle demanding full-time jobs with caring for their three-year-old son. 

Yet life for the Lopez family, who live in Austin, Texas, can be more challenging than for most. On top of the usual toddler chaos and antics, they must factor in a multitude of therapies for their son each day.

Little Ethan was first diagnosed with quadriplegia spastic cerebral palsy and dystonia after his parents noticed he was slow to reach his developmental milestones as a baby. The determined toddler can now take a few steps using a walker and his family is working hard to help him progress.  

“Ethan isn’t able to walk or stand independently and while he knows he’s different he’s really happy and content,” explains Brittany. “He’ll likely have his first surgery this year at three or four-years-old but can self-propel his wheelchair, crawl, and sit independently.  He has an adaptive bike and enjoys riding around with his friends. He loves to play, wrestle, and be goofy.”

Prior to his pre-school day, Ethan undergoes therapy and rotates between physical therapy, occupational therapy, and speech therapy four days a week. The family’s day often begins at 5:30 a.m. While Brittany carries out her duties as a corporate controller for veterinary clinics and Esteban goes to work at a mortgage company, Ethan attends an Early Childhood Special Education (ECSE) preschool program in Austin.  In the afternoons, the couple balance work commitments with more care for Ethan and ensure the little boy has a good balance of treatment and free time to play.

“He is into cars and books and a TV show called Puppy Dog Pals,” says Brittany. “He even has a stuffed toy of a little character from the show called Lollie who has a wheelchair. We know life may be challenging for Ethan but being part of the CP Research Network has really offered our family a lifeline. I would encourage anyone in our position to be active in the network. We are doing everything in our power to give him the most fulfilling life – whatever it looks like for him.”

John Borland with his family

CP Stories: The “Can Do” John Borland

“You can’t expect a group of people to respect you more than you respect yourself.” — John Borland

Retired health inspector John Borland, 68, has fought stigma and the feeling of being underestimated throughout his life with cerebral palsy. Today he shares how a relentless ‘can-do’ approach to living has helped him meet his full potential. 

John Borland with his family
John Borland with his family

John Borland can clearly remember the first time he realized he was ‘different’ from others. 

“I was about two years old,” he says. “The short story is that I was lying on our living room floor playing with my father. I watched him get up from his stomach on to his knees and then on to his feet. I tried several times to do what my father did – to be like him – but each time I fell over. After several tries, I knew I was not the same as others.”  

Around the same time, John’s parents, Samuel and Patricia, sought a diagnosis, learning that their son likely had spastic cerebral palsy and could be ‘slow to develop’.  Under the care of orthopedic surgeons at Hamot Hospital in Erie, PA, he was able to learn to walk. During a time where there was often the assumption that children with cerebral palsy were ‘mentally retarded’ John was also required to take a cognitive test to attend a mainstream elementary school.  

“It was ingrained in me that I was not the same, not as good as able-bodied people,” he says. “I was largely ignored by the other kids in school, and sometimes I was bullied. I had to fight to break that mold to attend college.” 

 John graduated from Edinboro State College (currently Edinboro University of Pennsylvania) in 1974 with a Bachelor of Science in Biology.   

After initially attending graduate school, John was forced to change routes and began to hunt for permanent employment. He found some temporary work but faced many rejections – some he believes stemmed from fear of his disability.   

It hit him hard but he found solace traveling to Alaska with his friend Skip and his family. During the four-month trip, his friends, as they always did, encouraged him to do everything they did – canoeing, hiking, and cross-country skiing.   

“They never looked at me as disabled,” he says. “It made me realize I didn’t want to be marked as exceptional for being disabled. I want to be marked as exceptional. You can’t expect a group of people to respect you more than you respect yourself.”  

Back home in Clarendon, John met with case worker, determined to fight in his corner and who, after five years, found a position with Pennsylvania State government. Throughout his 33-year career, John remained passionate about his work, among other duties, initially conducting health inspections at restaurants and other public facilities. Later as a program specialist, John worked to implement and facilitate drinking water staff training as well as contributing to state and federal  efforts concerning drinking water regulation and facility improvement. John also played a major part in developing Pennsylvania’s storage tank and biosolids programs and with facilitating municipal management of home wastewater systems.  

In his spare time, John embraced his wanderlust, travelling to a total of 43 states throughout the U.S. where he enjoyed adventures hiking, camping, canoeing, skiing or simply taking in the peace of nature. Sadly, he still suffered moments of doubt, even contemplating suicide, and feared he would not find companionship.  

“As a young adult, I couldn’t find acceptance or someone to want to be with me romantically,” he shares. “This grew to be a major source of darkness and trouble for me.” 

With difficulty, John pushed through his depression and worked hard to gain a promotion, relocating to Harrisburg, PA. It was there he was matched with his future wife, Judy, by a dating agency. 

“I forced myself to call her and begin a conversation,” he recalls. “I had to tell her that I was disabled and I figured when I did the call would be over. To my great surprise (as this had never ever happened to me before), she said, “I don’t care. When do you want to get together?” 

The couple became engaged and married in 1990. They have two children, Judy’s son Troy from her previous marriage and Joshua, who was born in 1992. Since then, the family has been blessed with two grandchildren.  

As a passionate contributor to the CP Research Network community, John now wishes to help young people with cerebral palsy to have the confidence to achieve their hopes and dreams. 

He adds: “We need to open the eyes of a great many people so they can see who a disabled individual can truly be and what they can achieve.” 

Dr. Michael Kruer

CP Stories: Why Genetics Matter

“We believe this study will move the needle and help patients and their families.” – Dr. Michael Kruer

As he embarks on a the Cerebral Palsy Research Network’s first publicly funded study into genetic causes of cerebral palsy, Dr. Michael Kruer, Director of the Pediatric Movement Disorders Program at Phoenix Hospital, hopes the landmark research will help transform patient care. 

Working as a dedicated pediatric neurologist, Dr. Michael Kruer is passionate about the young patients in his care and how to improve their treatments and therapies. 

Now, as he launches a three-year study examining how genetic factors connect with a CP diagnosis, he is hopeful the research could lead to better outcomes for many in the CP community. 

“We believe this study will not only move the needle for research but has the potential to impact individual patients and their families,” he tells the CP Research Network.  

Kruer is no stranger to people’s challenges with CP, having dedicated the last ten years to the study of genomics as it relates specifically to the condition. He received the CP Research Network’s first publicly funded (NIH) grant to launch his “Genetics Causes of Cerebral Palsy” study after approaching the network to collaborate on research.  

Five hundred participants and their biological parents will participate at Phoenix Children’s Hospital, AZ, Al DuPont Children’s Hospital, DE, Nationwide Children’s Hospital, OH, Seattle Children’s Hospital, WA, and Children’s Hospital Colorado, CO. 

“The beauty of working with the CP Research Network is it collects information that doctors and therapists enter as they are caring for people with CP at the participating sites,” adds Kruer. “It’s a wealth of information that we’re then able to leverage to try to take the genetics and make sense of it in a way that can impact diagnoses and treatments.”   

The study, which kicked off this month, in unison with CP Awareness Month, will compare the genome (the person’s genetic material and instructions) of people with CP with those of their parents, known as whole-exome sequencing analysis. If a participant with CP has children of their own, then researchers will track changes in the genome of multiple generations of the same family, which will be a first for clinicians. 

Until recently, CP was not known to have a genetic connection. Yet, increasingly research indicates that as many as one in four individuals may have a genetic cause for their CP.  

“Dogma in medicine is hard to change,” admits Kruer. Yet he remains optimistic that perceptions can gradually shift with sound research. Indeed, initial research linking genes to CP is already opening doors to new avenues of treatment for patients. 

“The most cutting-edge genetic technologies are exciting, but it’s only one side of the coin,” he continues. “If you don’t know how that technology relates to a real person and his or her symptoms, what they’ve gone through etc., then I think it’s an incomplete picture.” 

Dr. Kruer will share why genetics matter and detail the specifics of his latest study during a MyCP webinar this evening (Wednesday, March 10) at 8 pm EST. You can register here

If your family is interested in taking part, look for an invitation from your CP clinic at one of the participating sites. We will send you an invitation to our online consent application. Once the family gives their consent, they will receive saliva-based DNA sample collection kits. 

Eight year-old Hudson

CP Stories: “I want Hudson to pursue all his dreams.”

Hudson Birkin was diagnosed with cerebral palsy at the age of four. Today his mother, Suzanne, 51, talks about her fight to advocate for the care her son needs…  

Eight year-old Hudson
Eight year-old Hudson

When it comes to raising her eight-year-old son with cerebral palsy, devoted mother, Suzanne Birkin finds it best to take one day at a time.  

“It’s hard to think way into the future for Hudson,” says Suzanne, who lives with her son and husband, Carl, in Coventry in the United Kingdom. “We primarily concentrate on challenges as they arise and make sure he is happy and feels like a valued member of his community.” 

The little boy who loves to draw and build blocks was first diagnosed in 2016 when he was four-years-old after his parents noticed he was not reaching developmental milestones as a baby and toddler.  

In addition to CP Hudson also has a speech disorder. Since his diagnosis, he has undergone physical therapy, occupational therapy, speech therapy, and neurology consultations, all through the UK’s free National Health Service (NHS). This care has helped Hudson progress to taking independent steps while wearing splints and using a walker, but his family is unsure whether the NHS can adequately support his long-term needs.  

“We are lucky to get our medical needs covered by the NHS, but the help is limited,” explains Suzanne. “When Hudson got to the point where he was walking independently, his therapy was scaled back to once a year to review his progress. It’s frustrating. It feels like the NHS gets you to the bare minimum, and then they let you go. Hudson can only walk about 20 steps on his own! I’ve learned that you have to shout and complain to get more from the NHS. It works sometimes, but other times they just can’t provide.” 

Determined for their son to reach his full potential, Suzanne and Carl pay for their son to have private physical therapy consultations twice a year and private music therapy classes that help with his speech.  

Five days a week, Hudson attends Sherbourne Fields School, an all-age school for students with a broad spectrum of needs, including physical disabilities, medical conditions, and learning needs. The school facilities include a swimming pool, multi-sensory room, soft play area, and a strength and conditioning gym. 

“It is a fantastic school,” Suzanne says. “Hudson loves the routine and enjoys the social aspect of being with his classmates.” 

Suzanne, a dance teacher with three grown-up step-children in addition to Hudson, relies on family and friends and self-care to get through the challenging moments. 

“Yoga and concentrating on my breathing help me,” she says. “Escaping in my work helps too, and I have very supportive friends. I have a group of mommy friends whose children all have special needs. They just get it and understand the ups and downs.” 

As she supports Hudson through his CP challenges, Suzanne is thankful to be part of the CP Research Network and the opportunity to participate in research to help advance knowledge of Hudson’s condition. The family has already contributed to a speech research project via the network. 

“It was gratifying to see multiple-choice questions that reflected Hudson’s development,” she says of the experience. “Usually, I have to tick “other” because an appropriate answer isn’t on there. I felt validated and listened to. I’m happy to participate in anything that can bring more awareness to CP.” 

Right now, she is enjoying seeing Hudson grow and find his way. 

“Hudson is a quiet boy when you first meet him but opens up the more comfortable he gets,” she smiles. “He is interested in geography and loves to go on Google maps and look up his neighborhood and where his grandparents live in the U.S. He can navigate very well from Philadelphia, to where we live, to where his aunt lives in the south of England. He’s good at getting around! He is still working out what he wants to be when he grows up and sometimes says he wants to be a dance teacher like his mom or help people like his dad, who cares for adults with learning disabilities. I hope he has every opportunity to pursue any dream he wants to.” 

Dr. Garey Noritz

CP Stories: Dr. Garey Noritz

As the new chair of the AAP’s Council on Children with Disabilities, Dr. Garey Noritz has the cerebral palsy community in mind.

CP Stories

Dr, Garey Noritz, Developmental Pediatrician, Nationwide Children’s Hospital

A long-time supporter of the CP Research Network, Dr. Garey Noritz understands how vital the American Academy of Pediatrics’ commitment to helping children with disabilities is for the cerebral palsy community.

Now, in his new role as chair of the organization’s Council on Children with Disabilities (COCWD), he is determined to ensure that all children with disabilities – and their broader community needs – are kept at the forefront of the AAP’s work.  

He tells the CP Research Network: “The health of children can only be improved by improving conditions for children and families in all areas of their lives as we advocate for safe environments, effective schools, and most of all, just policies at the federal and state level.”

As an internist and pediatrician specializing in neurodevelopmental disabilities at Nationwide Children’s Hospital in Columbus, Ohio, Noritz is a member of the CP Research Network’s Executive Committee and understands how COCWD provides vital support to our community.

The council is presently revising a clinical report, “Providing a medical home for children and youth with cerebral palsy,” from 2011 to ensure that it contains the most up-to-date information and guidance for pediatricians treating children with cerebral palsy. 

For many years, COCWD has played an essential role in improving care for those with cerebral palsy. This includes providing clinical reports to pediatricians on all aspects of the care of children with disabilities, from screening and diagnosing young children to transition to the adult health system.   

“There is a lot of political clout with the AAP, so it is important to make sure children with cerebral palsy are represented and advocated for,” he adds.

Excited to begin his new role, Noritz credits the council as one of the most active and influential AAP groups and is excited to continue its legacy.

As we come to the end of a year that brought countless health and racial inequities to the surface, Noritz is determined to ensure that no child is left behind and lists inclusivity, research, advocacy, and education as priorities. 

Encouragingly, as he begins this important work, he expresses a wish to continue to have open communication with CPRN members to understand the community’s continuing needs.  

Congratulations, Dr. Noritz. We’re excited to work with you in your expanded capacities!