STEPtember: Research Funding is a Team Effort
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.
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 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.”
Today, March 25, is the federally recognized Cerebral Palsy (CP) Awareness Day! We are excited to announce the winners for our inaugural CP Awareness Month photo contest. In February, we began accepting submissions in five categories: creativity, diversity, participation & inclusion, perseverance, and physical activity. Each of the following submissions were selected by leading these categories in votes out of 13,383 counted:
Congratulations to each of these photographers and subjects for their selection and their prize of $100.
In addition to these winners, the staff and volunteers of the CP Research Network voted for best overall photograph in terms of what represented the CP Research Network’s values, the categories and our focus on wellbeing. The winner is:
Congratulations to Dawn McKeag for the photo of her son Fin and the coaches their local Y for adaptive basketball and the $500 prize!
In addition to this winner, our team wanted to recognize two pictures for honorable mention:
Thank you to EVERYONE who participated – submissions, shares and votes. We hope that by sharing pictures and our awareness banners we helped you create awareness for CP and celebrate our vibrant community! Our board will continue to match donations this month 2:1! Wear your green proudly today!
Join the Cerebral Palsy (CP) Research Network in our activities to celebrate National CP Awareness month. This recognized month is a great opportunity for us to create awareness about living with CP for the general public to help fund research, support disability policies, and to promote inclusion. There is so much you can do to help the community:
- In February, we gathered photos for our CP Awareness photo contest. You can vote for the best picture in each of five categories on our website. We will be awarding a total of $1,000 in cash prizes to the winners on national CP Awareness Day – March 25! Go vote for your favorites – and share them on social media to get more votes.
- We have CP facts as Facebook banners that you can download and use to spread the word. We will be posting a CP fact every day on our Facebook and Instagram – feel free to share those!
- You can buy CP Research Network merchandise at our Bonfire store and wear green through the month! A portion of the proceeds is donated to our work!
- You can donate or start a Facebook fundraiser – our board with 2X match the donations you give or raise throughout the month of March!
Please help us in our efforts to spread awareness for cerebral palsy!
The Cerebral Palsy Research Network will offer an informational webinar on wellness for adults with CP on February 23 at 5 pm ET. Earlier in February, we announced that we had partnered with the National Center on Health, Physical Activity and Disability (NCHPAD) to offer a free eight-week virtual course on mindfulness, exercise and nutrition (MENTOR) for people with CP and other disabilities. The webinar will feature NCHPAD Director James Rimmer, PhD and University of Michigan CP researcher Mark Peterson, PhD, discussing the benefits of exercise, mindfulness and nutrition. Several past participants from our pilot of MENTOR in April 2021 will join the webinar to answer questions as well.
“We are excited to share the details of our MENTOR program with members of the CP community,” said Dr. Rimmer. “Past participants recruited by the CP Research Network have helped us shape our wellness program for the CP community.”
Community members interested in learning more about MENTOR can register for the webinar on the MyCP Webinar Series page. If you are interested and cannot attend, you can register to receive an email notification when the webinar is completed and the recording is posted. Please join us.
In advance of Cerebral Palsy Awareness Month, which runs each year throughout the month of March, the Cerebral Palsy Research Network has launched a photo contest to highlight the lives and experiences of community members living with CP. The contest invites members of the community to submit up to five photos photos that depict their day-to-day life, adventures, challenges, joys, and journey. The CP Research Network has opened its gallery of submissions and will award $1,000 in cash prizes to five winners on March 25, 2022 – the day officially designated as National CP Awareness Day in the United States.
“We find that the CP community is underrepresented in so many forms of media today,” said Paul Gross, President and CEO of the CP Research Network. “As an example, stock photography agencies have very limited authentic photographs of the lived experience for people with CP.” The CP Awareness Photo Contest seeks to develop a rich set of authentic photos of people with CP that can be used in the CP Research Network’s growing cerebral palsy awareness campaigns for March and beyond!
The CP Awareness Photo Contest is opens today on CPRN.ORG. Contestants must be members of MyCP and may participate as an advocate, clinician, researcher or community member Prizes will be awarded as follows:
|Participation and inclusion||$100|
Winners will be chosen via a combination of votes and final selection by the CP Research Network. Contestants must sign a photo release as part of the entry process. Photos will be displayed on CPRN.ORG and CP Research Network social media channels. Detailed rules for entries can be found on the photo contest rules page. Dig through your archives or snap a new picture and submit it soon!
The Cerebral Palsy Research Network will kick off its 2022 MyCP webinar series with an interview of the authors of Pure Grit, a book full of stories about remarkable people with physical disabilities doing extraordinary things. The webinar is free and open to the public next Tuesday, January 11 at 8 pm ET. Ila Eckhoff, an accomplished financial services sector leader and one of the featured people in the book, will also join the conversation with authors Lily Collison and Kara Buckley.
The interview will include how the authors sought to develop the book, chose their subjects, and what they hoped the book would achieve. The one hour webinar will include 40 minutes of interview followed by open Q&A with the attendees.
Please join us for the interview. If you are not already registered for the MyCP Webinar Series, you can sign up here. A free Zoom account is required to sign into the webinar. We look forward to seeing you there. If you cannot make it, the interview will be recorded and posted on our YouTube channel within 24 hours.
At the Cerebral Palsy Research Network, we have a lot to be thankful for. You, our great extended cerebral palsy (CP) community, helped us achieve our fundraising goal of $10,000 this past month for our MyCP webinar series in 2022. With our board of directors’ matching, we raised more than $30,000 for our network! We are excited to bring our MyCP webinar series back in full swing next week beginning with a live interview of the authors of Pure Grit (details to come out tomorrow). Thank you to all who contributed and helped to spread the word!
2021 in Review
Last year was transformative in numerous ways for the CP Research Network. We kicked off the year with the announcement of our merger with CP NOW. The combination of their educational and wellness programming with our efforts led to significant accomplishments including:
- The launch of our new website that combines the shared experiences of CP Daily Living and MyCP, with the educational value of the CP Toolkit and Wellbeing Guide. It also offers details about our research and quality improvement programs.
- Twelve webinars featuring clinician and research leaders from our network highlighting the significance of the work that we are embarking on to improve outcomes in CP.
- The pilot of a lifelong wellness program in partnership with the Centers for Disease Control and Prevention and the University of Alabama focused on mindfulness, exercise and nutrition for adults with cerebral palsy.
- The launch of a free, virtual adaptive fitness program for members of our MyCP community in partnership with Staying Driven and subsequent sponsorship for this program by Neurocrine Biosciences.
Our Research and Quality Improvement initiatives made significant progress in both seeking to answer key research questions about CP and improving the treatment of people with CP now. A few highlights include:
- The launch and significant enrollment of participants in our genetic causes of CP study headed by Dr. Michael Kruer of Phoenix Children’s Hospital.
- The presentation of preliminary findings from our adult wellbeing study and our pain assessment quality improvement initiative. Both of these studies are ongoing.
- Submission of two new cerebral palsy study applications to the National Institutes of Health (NIH)
- The conclusion and results of two of our studies:
- Research CP Dystonia Edition: A community driven research agenda resulting in the top 10 research areas for dystonia in CP.
- Speech and Language Predictors of Participation for Children with CP
- The launch of studies in each of our four treatment improvement areas including adult pain assessment, dystonia diagnosis, hip surveillance and intrathecal baclofen pump infection reduction.
- One new publication, acceptance of two new to-be-published manuscripts, several presentations at society meetings including one top 20 abstract selection for our dystonia research agenda and an associated Outstanding Junior Member award for Dr. Laura Gilbert at the Child Neurology Society.
What’s new for 2022?
We have a lot of projects that will culminate in 2022! These include multiple publications of our work in leading journals, partnerships to sustain and grow our wellbeing offerings, continued progress on our research and quality initiatives, and the return of our MyCP webinar series to name a few.
There are lots of ways to stay engaged with us.
Please consider one of these:
- Good: Sign up for email alerts.
- Better: Engage in our MyCP webinar and wellness programs to stay informed and healthy.
- Best: Join MyCP and get customized email alerts and personalized content offerings.
All the best to you and the entire CP community for 2022!
While physical activity is important for everyone’s health, it has been shown to be even more important for people with disabilities like CP who are at greater risk for cardiometabolic disease.[ref] The challenge is that most gyms or virtual fitness programs don’t have appropriate accommodations or adaptations for people with CP. Staying Driven, founded by Steph Roach, a former CrossFit trainer who has CP, focuses on fitness for people with disabilities. Our program was an attractive fit for Neurocrine which has a philosophy is to holistically support and be good partners to the patient community they hope to serve.
The Neurocrine Biosciences sponsorship not only extends the length of the program, but enables the CP Research Network to reach more community members. Teens and adults with CP who are interested in participating in the MyCP Fitness program can sign up for free on our Cerebral Palsy Fitness page.
It’s a daily decision to keep fighting and believing in yourself.
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.
“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.
“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.
“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.”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.”