CP stories offers presentations, webinars, and guest speakers, discussing cerebral palsy research, the Cerebral Palsy Research Network (CPRN) updates, life with cerebral palsy, caring for a loved one with cerebral palsy and access for you to join the interactive cerebral palsy community, with families, caregivers, adults, and medical professionals all in one place!

A young man with black hair and a beard stands in his walker in a red short sleeve shirt smiling broadly with waves behind him.

CP Stories: Jay Pande, Budding Scientist, Plans to Give Back to the CP Community

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Soon after Jay Pande was diagnosed with cerebral palsy at nine months, his parents quickly started familiarizing themselves with current CP research. His mom, Poonam, and his dad, Girish, are both pharmaceutical scientists, so their attitude toward treatment reflected their clinical backgrounds. “We have always approached the treatment of my CP with a focus on data and evidence, both from my own experience and that of our network of medical providers and other families,” said Jay of his childhood. After trying various interventions, Jay and his family eventually settled on a steady, diversified diet of standard and aquatic physical therapy, as well as an “extensive home program of stretching and exercise.” This approach has been particularly effective in maintaining Jay’s flexibility and walking ability, but Jay and his parents are faithful only to what works: “We continually adjust our treatment strategy as we observe functional limitations or opportunities for improvement,” said Jay.

As Jay made his way through the school system of his home state, North Carolina, he found it increasingly difficult to keep up with the demands typically faced by students. He’d always been academically inclined, especially favoring math and science, but general fatigue, motor delays, and visual processing issues meant that he had additional needs that weren’t being met. Jay pointed to the Closing the Gap Conference, which he and his parents attended in Minnesota in 2010, as a real turning point. “I was able to see examples of assistive technology, and I had a much better idea about what technology I needed to be successful,” said Jay. Just like he and his parents arrived at his therapy regimen, it was a matter of figuring out what Jay needed to thrive, and then fine-tuning from there. The process was far from easy—like so much else in advocacy work, it was nonstop trial and error—but the family’s efforts have allowed Jay to excel.

A young man with black hair and a beard stands in his walker in a red short sleeve shirt smiling broadly with waves behind him.

Jay Pande, graduate of Duke, is a 2nd year PhD student in computer science at North Carolina State University. He hopes to use technology to help people with disabilities be successful in academic settings.

Jay’s hard work earned him a spot in Duke University’s class of 2020, where his course of study, computer science, was directly influenced by his experiences with CP. “I chose to major in computer science because I was very cognizant of how technology has enabled my academic and professional success,” he said. As a current 2nd-year PhD student in computer science at North Carolina State University, Jay plans to build upon this interest by creating new technology to empower disabled people to be successful in academic settings. When I asked him about his research, he responded, “I’m interested in how natural language processing, and especially automatic speech recognition, can support universal design and level the playing field for people who struggle with writing, typing, or interacting with a computer during learning activities.” It’s hard not to see this research interest as resulting directly from the assistive technologies that aided his early academic pursuits.

A young man with black hair smiles broadly sitting in his wheelchair with a navy blazer, light shirt, red tie and khaki pants

Jay Pande prepares to go to the Disability:IN conference in Chicago in 2019.

Despite a demanding course schedule—computer science is notoriously work-intensive—Jay also managed to also remain active in local disability advocacy communities during his undergraduate years. By the time he was a sophomore at Duke, he was president of the Duke Disability Alliance (DDA), a student organization promoting accessibility and inclusion of people with disabilities in the Duke community. One of his duties included organizing DDA’s annual Disability Pride Week. He also played a key early role in advocating for an on-campus space for students with disabilities. “I feel very proud that I, along with the other students I worked with, made the Duke community a more welcoming place for people with disabilities,” he said. Likewise, Jay is on the advisory committee of the AAAS-sponsored Working Group for Students and Professionals with Disabilities. About his involvement with the organization, Jay said that he’s “excited by the insight the working group continues to provide into how to increase the participation of people with disabilities in Science, Technology, Engineering and Mathematics (STEM).”

Jay has also remained active in the larger CP community, particularly CP Research Network. His family first became involved with the organization after his mom attended a 2017 CP Research Network meeting in Chicago, and since then, Jay has made it a point to attend the CP Research Network webinars and participate in studies. In Spring 2021, he also participated in network’s MENTOR program. “I really appreciate how these experiences have helped me feel connected to other people with CP and have shown me that I am not alone in striving to be as healthy as possible while living a fulfilling life,” said Jay.

When we asked Jay why he values collaborating with the CP Research Network, he talked about the uncertainty he felt regarding how CP would affect his life as he aged. For a long time, CP was thought of as a condition restricted to childhood and adolescence, and the CP Research Network has worked to change that perception. “CPRN is doing great work to improve our collective understanding of CP,” said Jay. “I am hopeful that, in the future, I’ll have less uncertainty about the best ways for me to stay in good health.”

And so it is fitting that, in some sense, Jay’s PhD research will focus on a similar topic: how to improve the lives of people with disabilities. He expects to remain in academia after his PhD and continue researching technological innovations which ensure equitable access to education for people with disabilities. He still has a lot of work to do to make these formative plans a reality, but with young researchers and advocates like Jay, the CP community is in excellent hands.

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

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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.”

CP Stories: Josephine and Her Family Hit the Ground Running. They Haven’t Stopped Since.

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Eventually, Josephine would be released from the neonatal intensive care unit and sent home with her parents, Nina and Zach. But for the first seven weeks of her life, she fought to survive. Born postmature at 42 weeks, she experienced oxygen loss, resulting in Hypoxic Ischemic Encephalopathy (HIE), which commonly leads to cerebral palsy (CP). “Thinking back, sometimes I’m not sure how we survived the nonstop fussing, sleepless nights, and fear,” said Nina, Josephine’s mom.

From the moment Josephine got home, Nina and Zach hit the ground running. “We dove in hard and fast,” said Nina. They were fortunate to receive a formal diagnosis at eight months, which is relatively early for CP. The benefits of an early diagnosis are myriad, but it was most helpful in that it allowed Josephine to start an intensive therapy program and gain access to early intervention services. The doctors treating Josephine at the time did not mince words—the injury was likely permanent—but they did stress that intensive physical therapy could mitigate and even improve CP-related symptoms. Nina remembers one physical therapist, Gail Fennimore, as particularly helpful and encouraging: “Gail helped us learn about neuroplasticity and the ability to reestablish or improve movement patterns and muscle tone,” Nina explained. Now ten years old, Josephine’s therapy journey has been incredibly effective in improving both her day-to-day life and her future prospects.

A backlit photo of the Miller family in front of a lake when out camping.

Camping and hiking are a big part of the Miller family life and Josephine is active participant.

Josephine was also fortunate that her grandfather, Nina’s father, is a scientist and engineer, and was able to quickly acclimate himself with cutting-edge CP research. Learning about the latest research aimed to improve outcomes for children and adults with CP became a passion for the family. “We scoured every piece of information we could find about studies and emerging discoveries with the hope of identifying promising treatments,” explained Nina. Because of the time and care that Josephine’s family put into familiarizing themselves with CP research, her quality of life improved dramatically. Nina started connecting with other parents who had the same proactive mindset, and eventually, she met Michele Shusterman, Director and Co-Founder of CP Research Network. At the time, Shusterman was running CP NOW, which Nina described as a vital resource hub for families trying to make sense of the deluge of CP research that has been published in the last decade or so. “Meeting Michele, I felt like I could breathe again. I felt empowered to fight for Josephine and to just be her mom. I felt a sense of community that bolstered all of us,” she said.

And so Nina’s initial connection to the CP Research Network was a natural one, based on a desire to make sense of new information, share it, and forge bonds with the larger CP community. For Nina, this initial connection would spark a series of more formal relationships with CP organizations. She would go on to work at the Cerebral Palsy Alliance Research Foundation (CPARF) for two years, supporting their medical research grant writing program, partnership development, and helping organize the annual STEPtember fundraising event. “My two years at CPARF were some of the most inspiring and exciting of my life,” Nina said. These two years ended on a beautifully appropriate note: right around the time that Nina’s time with CPARF was coming to a natural close, Josephine had the opportunity to speak at an international summit of CP researchers interested in accelerating innovation for mobility- and speech-based adaptive technologies. At just five years old, Josephine spoke (using her eye gaze communication device) in front of a crowd of more than eighty scientists and engineers about her experience in kindergarten, and how frustratingly slow her current communication technology was. The conference—of which Josephine was, to be sure, a major part—would accelerate the development of a brain-computer interface for real-time speech.

A child with long brown hair sits in her wheel as her father adjusts her head.

Josephine, in her wheelchair, out shopping with her parents.

Josephine has just started fifth grade; she finished fourth grade with all A’s and B’s. She learns in a traditional classroom environment, with the help of a special educator who works with Josephine to adjust the classroom materials into a format that works for her. Despite the ups and downs of her eye gaze technology in the classroom, Josephine loves school and is particularly fond of reading. But that’s far from her only interest; Nina and Zach have made it a point to keep Josephine involved in extracurriculars. She routinely swims, does therapeutic horseback riding, and has also played in her local Miracle Baseball League. This year, she added two new seasonal activities to the list: Alpine skiing and waterskiing. The Millers are also avid outdoor adventurers and will not let mobility challenges rob Josephine of the many benefits of being immersed in nature. Whatever it takes to hike, bike, ski, and ride, they will always get her there.

There are, of course, highs and lows, but Josephine and her family are constantly looking forward. Nina has kept in touch with CP Research Network since she first met Michele Shusterman, and has remained involved by taking on small content development projects for the organization. She recently started a demanding position at Microsoft but hopes to commit a few hours a week to CP Research Network by the end of 2022.

Mom and daughter cuddle in a hammock strung between trees on a camping trip.

Summer and fall mean camping and other activities for Josephine and her family.

Now that we’re in fall, Josephine finds herself between the Alpine skiing and waterskiing seasons. Nevertheless, it remains one of her favorite times of the year: between an upcoming camping trip, her dad’s birthday, musical festivals, and her beloved brother’s soccer games,she has a full social calendar ahead. She’s also happy to be back in school again, surrounded by friends, classmates, and the larger community. Whatever the future brings, Josephine will be ready for it.
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

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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.”

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

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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.”

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

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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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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

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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.

CP Stories: Alexander and Lisa Diller

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A young man with cerebral palsy dressed in a scouting outfit and smiling hugs his mother in a black sweater and striped shirt.

Alexander Diller, a young man with CP from his premature birth, hugs his mother Lisa, during a scouting event.

Like so many others with cerebral palsy (CP), Alexander was born premature, at 27.5 weeks. While on an oscillating ventilator, the endotracheal tube scraped the back of his throat, triggering a bilateral pulmonary hemorrhage. In turn, the hemorrhage caused intraventricular bleeding, which resulted in hydrocephalus. It would be nine weeks before Alexander was discharged.

During his nine-week stay at the hospital, Alexander’s parents—Lisa and Tim—began their advocacy, working alongside a neonatologist to ensure that Alexander had regular skin-to-skin contact. While this practice is common today, it was rare twenty years ago. Because pediatric neurologists often prefer to wait before making the diagnosis, Alexander would be three before he was formally diagnosed with CP. But as a physical therapist with advanced neurologic training, Lisa suspected it from early on: the month Alexander arrived home, Lisa said, he “began to show signs of lower extremity spasticity and other movement patterns characteristic of spastic diplegia.”

Growing up, Alexander has faced the kind of ableist pushback that young people with CP and their parents have come to expect. As Lisa and Tim prepared him for kindergarten, they settled upon a private school that they thought was best equipped to meet his needs. The school initially expressed reservations about their ability to accommodate Alexander, but after Lisa, Tim, and Alexander’s preschool teacher, Pat, assured the school that Alexander’s needs were as simple as finding a chair that allowed his feet to touch the floor, he was accepted. Later, in high school, Alexander would compete in impromptu and extemporaneous speaking, only to be docked points for his “walking style.” Some judges even went as far as commenting that he should “fix it.”

Alexander has taken these challenges in stride: he was talkative and outgoing from an early age. He has maintained an active, fulfilling extracurricular life in high school, consistently qualifying for impromptu and extemporaneous speaking tournaments[1] at both the state and national levels despite insensitive comments from judges. But the transition into high school did present its own challenges. “We had an influx of new freshmen that I met for the first time,” Alexander said. “I also had new teachers. A lot of it was explaining my CP or answering their questions.”

There were, too, the stares and the speculation from students Alexander didn’t know personally. They wondered whether his CP implied an intellectual disability, something that folks with physical disabilities often must contend with. “Sometimes there were assumptions that because I had CP I wouldn’t be capable academically,” Alexander said. Working with a psychologist who also has CP guided Alexander through the transition. Hearing from someone who had faced similar challenges helped Alexander develop strategies to better understand his own feelings.

Adults with CP have served as valuable mentors for Alexander. During his time with Boy Scouts—he recently attained the rank of Eagle Scout with a silver palm in 2021—Alexander met Steve, a Scoutmaster who also happened to have CP. Alexander has relished the physical challenges that scouting entails. During the same summer he met Steve, Alexander successfully completed a 50-mile hike over a 12-day period with his troop at Philmont Scout Ranch in Cimmaron, New Mexico. Later that summer, he then completed a 50-mile bike ride in seven hours on the Olympic Peninsula.

Scouting aside, Alexander is also an avid Aikido enthusiast and will be testing for his first-degree blackbelt in March. Lisa and Tim made it a point to foster Alexander’s interests from an early age. Some of this was pragmatic: This passion has helped Alexander physically, particularly with his strength, balance, and coordination skills. But it has also helped him develop a strong sense of independence. “Aikido has allowed Alexander to practice with his peers and teach younger students,” said Lisa.

The parents of children with CP inevitably become experts as the child ages, but Lisa’s background in physical therapy has also informed her approach to Alexander’s CP. “I feel my educational background, connections to my peers, and access to current research has enabled me to make educated and informed decisions about Alexander’s care and advocate for him when needed,” said Lisa. “It has also enabled me to teach Alexander from an early age how to advocate for himself.”

As Alexander transitions into adulthood, his independence will undoubtedly prove useful. He recently turned eighteen, starting to cross “the unsteady bridge from pediatric to adult care,” as Lisa called it, that both researchers and advocates alike realize is a critical time. As an educator and provider of adult neurological interventions herself, Lisa has made it a point to stay informed about current research so that she can help guide Alexander during the transition.

Now that Alexander is eighteen, he has started taking the CPRN registry surveys with the hope of contributing to the improvement of treatment interventions for individuals with CP. He graduates from high school in June 2022, and either D.C. or the Northeast seem like the most likely landing spots for college. He will study international relations and global health, ideally with an emphasis on East Asia (he has been learning Mandarin since he was six). “I’d like to involve myself in diplomacy and create policy that’s based on the needs of a community,” said Alexander. What he ends up doing, of course, will be up to him. But it’s abundantly clear that Alexander’s future is bright.


[1]An impromptu speech tournament requires participants to prepare a speech on an unplanned topic in just a few minutes.

A grey page banner with a photo of Heather Hancock, a smiling woman with long brown hair wearing a red sweater and glasses.

CP Stories: Heather Hancock Defies the Odds

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How Heather Went from Survival to Pioneer for Change

From the moment she was born prematurely, CPRN advocate Heather Hancock was battling to survive. Today she reveals how she is still fighting for adequate care for adults with cerebral palsy.
Heather Hancock, pictured with long brown hair and red shirt, wire rimmed glasses with a book case behind her is an editor

Heather Hancock is a writer and an editor as well as an advocate for cerebral research and care for adults.

When Heather Hancock was born more than three months prematurely – at 25 weeks gestation – doctors warned she would struggle to survive the first 24 hours of life.

But Heather defied the odds. After three months in an incubator, the tiny baby was well enough to be taken home. That was the first day her mother, Edna, was allowed to pick up her baby and hug her.

As a toddler growing up in Calgary, Alberta, Canada, Heather was slow to crawl and meet her physical development milestones. Meanwhile, her younger brother, Colin, born 13 months after her, was advancing rapidly.

Her family faced a fight to enroll her at the local school.

“Back then, disabled children were shunted away to special schools out of the public eye,” she says. “I was integrated into the public school system, which was great for my education but not good for my social life. Kids did not accept me very well, and neither did their parents, so I endured incessant bullying from kindergarten through to grade 12.”

The bullying took its toll on Heather. By the age of 14, she was having suicidal thoughts but fought through them, crediting her faith for continually bringing her comfort and purpose during dark times.

As an adult, Heather was keen to pursue a career as a registered nurse but faced more hurdles. Halfway through her training program, she began to experience pain in her knees. Being on her feet for hours on end and the job’s physical nature was too much for her. Mustering her characteristic grit, Heather went back to college to get an office administration certificate. She was determined to work in healthcare and took up a position as a unit clerk in an outpatient clinic.

However, after a 22-year career, Heather began to experience painful lower back spasms. The pain made it impossible for her to walk for several hours each day, and she took medical retirement at 44.

“It seemed like nobody could tell me what was going on,” she recalls of that time. “In Canada, there is no doctor that specializes in adults with cerebral palsy. It feels like you are just cut loose when you are 18 and told to “have a good life!”

Although she underwent rehabilitation and saw physiatrists who work with spasticity and stroke patients, she noticed a stark difference from the care she’d received as a child.

“It can get harder to find a team of doctors as you get older,” she explains. “Today children with cerebral palsy are sometimes treated by a multidisciplinary healthcare team. It would be great if adults had the same access to help, equipment, and physical therapy. Finding the right team of doctors is crucial so that everyone can put their heads together and come up with a plan.”

Professionally, Heather pivoted to other talents. She forged a new career as a professional coach providing inner healing for women suffering from trauma and abuse. Then, in March 2019, Heather began working as a contributing writer penning fiction and poetry for CoffeeHouseWriters.com. She became an editor in June 2020. Working to her own schedule helps manage her pain.

“When you are your own boss you can schedule things for times that work better for you,” says Heather, who now writes from home in Maple Creek, Saskatchewan, Canada.

Meanwhile, Heather continues to advocate for the Cerebral Palsy community. She relentlessly contributes to research and discussions on the CP Research Network’s MyCP community forum to ensure that the “absence of knowledge and care for the adult CP community” is addressed. She is also pushing for change with her local cerebral palsy association in Saskatchewan and national and international groups.

“I’ve been a pioneer since I was old enough to walk,” she smiles. “I may not see the benefit in my lifetime, but the younger generations will.”

Thank you Heather for sharing your inspiring story!

Marquis Lane, a smiling young man seated on a walker, wearing a Georgia sweatshirt with four friends behind him at a stadium.

CP Stories: Marquise Lane

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Marquise Lane, with a beaming smile and glasses sits listening to music in his college dorm with a navy football sweatshirt

Marquise is always smiling ear to ear — here while listening to music in his dorm room.

It’s a daily decision to keep fighting and believing in yourself.
”
Marquise Lane – Client Success Specialist

For Marquise Lane, succeeding at college wasn’t just a matter of working hard and pushing himself academically. Conquering his CP mobility hurdles and achieving independence were also vital.

When Marquise Lane graduated from UGA in 2016 with a BA in Management Information Systems (MIS) the moment was extra special to him.

As a young person with cerebral palsy, Marquise hadn’t just put in the hours of study needed to gain his degree, he’d also worked tirelessly to overcome the physical hurdles holding him back from his college dreams.

In high school, Marquise got up very early to make sure he dressed himself – here in khakis and a grey argyle sweater.

Marquise was determined to be independent from an early age so he made sure he got up early to have time to dress himself.

“I always wanted to go to college,” says Marquise, 27, who lives in Valdosta, GA. “But it wasn’t the mental things like the schoolwork that were in the way, it was more of the physical things like dressing and putting shoes on.”

Armed with a positive mental attitude, Marquise took on the challenge with gusto. Throughout his 12th grade, he got up extra early in order to practice mastering the independent skills he needed to succeed.

“I had to leave the house at 7 am so I’d get up at 5.30 am to give myself that extra time to dress and put my shoes on by myself – just to practice,” he recalls. “For a while I needed help but I got to the point where I was independent enough. Eventually, my mom agreed I was ready to go to college.”

Marquise was diagnosed with Spastic Diplegia cerebral palsy at the age of three and says he grew up fully understanding what having CP meant.

A young Marquise, in a white t-shirt, demonstrates his domestic skills by ironing a pair of his dark slacks

A young Marquise Lane takes up ironing his own slacks to help out around the house.

As a young boy, Marquise wanted to do the same activities as other kids his age but also knew his circumstances were different

At seven years old, Marquise wanted to do all the activities his peers did including baseball!

“My mom’s always been big on talking to me like an adult so from three I knew what I had,” he says. “I don’t really like the word “different” because I do feel like I’m a normal person, I just have a different set of circumstances I have to deal with. As a younger kid I looked at other kids and saw them do things like swing on the monkey bars and then play football and sport. I wanted to do that too, but it was hard because I couldn’t. You have to fight that feeling of “I’m not good enough” or “I’m weird.” Every day you have to wake up and focus on the small victories and the positive things you’ve done. That provides momentum to keep going forward.”

At UGA, Marquise lived alone on campus in an accessible room and says he is grateful for the friends he made who would always lend a helping hand with things like Walmart and barbershop runs. His challenges on campus ranged from navigating the hills in Athens, GA, to working out how to get from A to B. From the start, the college paired him with a disability coordinator tasked with ensuring all his classes were accessible and that he had all the help and resources he needed.

“UGA went out of its way to make sure I could get to where I needed to be,” he says. “I had all the tools I needed to succeed academically and UGA provided a van service that took me from class to class and just about anywhere else on campus I needed to go.

Marquise Lane sits down on his aluminum walker smiling with a wrought iron arch and a building with white pillars behind him

Marquise Lane sits on his walker smiling while on his college campus

“There were several occasions where an entire 300-person class was moved because the original building wasn’t accessible for me and I had letters to share with professors so they were aware of any special assistance I needed.”

Regardless, it took stamina and endurance for Marquise to keep pushing toward his academic goals.

“It was tough at times,” he says. “When you look around you see that most people don’t have to work as hard as you do to accomplish basic tasks. They don’t have to worry about accessibility and how far away things are. I learned to focus on myself and limit comparisons.”

Marquise Lane, in a red sweatshirt at a job fair, sits holding a large white sign with the words “Hire Me” in red

Marquise was not shy in pursuing work out of college.

He cites graduating from college as the culmination of belief in himself and hard work. “It showed me and my family that I could do anything I put my mind to,” he says.

Since graduating in May 2016, Marquise has worked as a client success specialist for ProcessPlan. His goal now is to continue living independently and advance his career.

“There isn’t some magical point where you have things figured out and that’s it,” he says. “Having a vision for the things you want to accomplish in life helps. Once you have a vision, you can break that down into actionable steps and go forward. It’s a daily decision to keep fighting and believing in yourself.”