CPRN (Cerebral Palsy Research Network) news updates everything CPRN is doing for, and within, the cerebral palsy community. You will discover updated research information, new location sites for the Cerebral Palsy Registry, and more for you to check out today!

Steph 'The Hammer' Roach, Adaptive Fitness Coach

Adaptive Fitness and Cerebral Palsy

Steph “the Hammer” Roach,
Adaptive Fitness Coach

Exercise has long been hailed as good for the body and mind, regardless of people’s abilities or levels of fitness. But for people with CP, who are at high risk of chronic diseases, physical therapy and exercise are vital components to staying strong and healthy… 

Anyone can improve their health with exercise and movement. Still, for the CP community, who often experience muscle tightness and symptoms of early aging, the stakes for wellness are even higher. 

“Adults with CP have a higher risk than people who don’t have CP for cardiovascular, renal, musculoskeletal (bone and joint problems), and respiratory disease,” says Dr. Ed Hurvitz, Chair of Physical Medicine and Rehabilitation at the University of Michigan. “The common pathway is inflammation. People who are obese, who have poor fitness levels and don’t move around enough, have a high level of this inflammatory state.  

This may be one of the things contributing to the higher risk of chronic diseases in adults with cerebral palsy.” 

The American College of Sports Medicine recommends that adults do at least 150 minutes per week of moderate-intensity, heart rate raising, exercise, and muscle-strengthening activity at least twice a week.  

“There is no evidence to suggest that these requirements should be any different for people with cerebral palsy,” states guidance from the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM). “Many people with cerebral palsy are very physically inactive, and these recommendations may be quite difficult to achieve.  

“Some exercises may not be possible, depending on the severity of cerebral palsy. The good news is, many health benefits may be achieved by doing less than the recommendations. Being fit and exercising should not be considered all-or-nothing. Start small, become familiar with aerobic and resistance exercise, and gradually progress exercise time, frequency and intensity. It is better to stick with a program than to do nothing, simply because you cannot reach the recommended levels.” 

So how can the CP community build stamina and strength? As an extension of physical therapy, many people with CP are encouraged to participate in adaptive fitness – otherwise known as personal training adapted to their abilities. Such training sessions could include cardio, stretching, strength training, core work, and gentler movements such as Pilates. 

An ongoing hurdle for our community is how the fitness and exercise industry is predominantly tailored to the majority-abled. Thankfully, as we shift into a more accessible society for all, inclusivity is on the minds of many organizations. All over the world, multi-million dollar brands such as Peloton acknowledge the need to be more adaptive. 

“Accessibility is very important to us, and our teams have been actively working on the implementation of more accessibility features, most recently for the visually impaired on our software and hardware,” an accessibility spokesperson told the CP Research Network in an email. Members of our community were also encouraged to join Peloton’s member focus groups to test accessibility. 

Meanwhile, changemakers like adaptive fitness coach Steph “The Hammer” Roach are paving the way to empower differently-abled athletes. 

Roach, the first woman with cerebral palsy to become an L2-certified Crossfit coach, was the owner and manager of a gym in North Carolina when the pandemic hit in 2020. 

Determined to turn the experience into a positive, she quickly pivoted to build an online fitness organization Staying Driven providing all-inclusive adaptive training classes for a low monthly cost. 

The organization provides programs and coaching and a supportive community to help everyday people achieve a greater fitness potential. Classes range from mixed ability work-outs to classes specifically for spinal cord injury athletes or the developmentally challenged. 

“In this time of isolation, you can still be engaged to be fit, athletic, and social,” says Roach, who says she saw a real need for accessible adaptive fitness for people across the differently-abled community. “Making it fun for athletes is pretty awesome, and I love seeing their transformation week after week. It’s not about lifting heavy weights; it’s really cool when an athlete comes to you and says, my doctor says my blood pressure is awesome. My doctor says I’ve lost 8lb, and I’m feeling great.” 

Alex McGee enjoys the classes by Staying Driven

Roach’s clients include Alex McGee, 25, who has moderate CP and uses a posterior walker. He discovered StayingDriven in a CP support group at a time when he felt isolated and that he had lost confidence, 

“When you have CP, you always need physical exercise and to stay in shape because otherwise, you’ll lose it,” he explains. “It’s very hard to find things for adults for CP. If it were up to my physician, she’d have me come in twice a week for PT, but with insurance, that’s not possible. My therapist and I talked about adaptive fitness.” 

Alex attends weekly Staying Driven classes online, working out via Zoom at the home he shares with his parents in Florida. 

“It’s hard, but doing it feels really good,” he says. “Core is important for the ability to walk, so I work with a core ball. The instructors adapt the exercises to the capacities of the people attending. They ask for concerns and tell you to use a chair if you need it. You can work out sitting down or standing up. They give you the option. I work out on the carpet in my bedroom for safety, so it’ll be alright if I fall. Some days you have better balance than others. We know our bodies better than anyone else.” 

As well as feeling physically stronger, Alex says he has noticed mental health benefits from attending a group class. He has come to view his fellow athletes who turn up week after week as friends. 

“Most of the time, it’s the same people, so the group class is a social benefit,” he says. “There’s social interaction, and they tease me pretty good. If you’re trapped in the house, then I recommend it.” 

Staying Driven broadcasts interactive classes twice a day, Monday to Friday and once on Saturday. Athletes are charged $20 a month and can take any hour-long class.   

Participants are required to sign a safety waiver to ensure they are willing and able to do the sessions. Roach advises finding the right balance between challenging and safe. 

“We don’t require any particular equipment, and athletes use things they have already like water bottles or pillows,” adds Roach. “I’m a huge advocate of exploration and allowing people to realize what they can and can’t do on their own.” 

Many people with cerebral palsy benefit from a multifaceted approach to managing their condition, combining regular therapies, exercise, and a healthy diet and lifestyle. The CP Research Network is partnering with the National Center on Health, Physical Activity and Disability (NCHPAD) to enroll ten CP community members in a free MENTOR program focused on health, wellness, exercise, mindfulness, and nutrition. Read more here . 

Congressional Neuroscience Caucus

CP Research Network supports advocacy efforts to advance research for neurological conditions

Congressional Neuroscience Caucus
Congressional Neuroscience Caucus 

The Cerebral Palsy Research Network is proud to sponsor this month’s Congressional Neuroscience Caucus (CNC) briefing focused on improving neurodevelopmental disorders. 

The briefing entitled “On Neurodevelopmental Disorders: The Challenges and the Opportunities” will occur on Wednesday, March 17, and has been organized by the American Brain Coalition.  CP Research Network is an event sponsor alongside Autism Speaks, the American Academy of Neurology,  and the Society for Neuroscience. 

The bipartisan Congressional Neuroscience Caucus promotes a better understanding of how the brain develops, functions, and ages and promotes legislation that will further advance neuroscience research. It is co-chaired by Representative Cathy McMorris Rodgers (R-WA) and Representative Earl Blumenauer (D-OR). The caucus seeks to raise awareness about the millions of Americans afflicted with neurological disorders or mental illnesses.  

CP Research Network leader Dr. Bhooma Aravamuthan, a pediatric neurologist and movement disorders specialist from Washington University, will be one of three experts presenting at the briefing. She will outline the need for more research for cerebral palsy (CP) and address how neurodevelopmental disorders impact children with CP.  

“I am thrilled to have the opportunity to explain the importance of research in improving the lives of people with CP to members of Congress,” said Dr. Aravamuthan. “Many basic knowledge gaps exist in our understanding of CP and how to treat it. I look forward to helping Congressional attendees understand the impact of CP on their constituents and appreciate the clear need for additional research in the field.”

Our team has advocated for people with CP throughout our journey to creating the CP Research Network. This includes working with the National Institutes of Health (NIH) for increased attention to CP research. We will continue to call for improvements in research and care and amplify the voices of our community. 

Is your Representative a member of the Congressional Neuroscience Caucus? Not on the list? Contact them and ask them to join today!  

CP Fact: Cerebral Palsy affects movement and posture for all of those diagnosed.

Cerebral Palsy Awareness: Spread the Word!

CP Fact: Cerebral Palsy affects movement and posture for all of those diagnosed.

The Cerebral Palsy Research Network launched a new CP Awareness campaign today in honor of CP Awareness Month.  We have created a set of Facebook (FB) Cover Photo banners with key facts about CP for you to install on your personal FB page. Each day we will be sharing more on our social media pages, and you can help us educate the general public about CP by sharing this information.

You can download one or all of the banners at https://cprn.org/cp-awareness-fact-facebook-covers/.

Spread the word and win a CP Research Network t-shirt or coffee mug!

CP Research Network t-shirt
CP Research Network Mug
CP  Fact: 1 in 3 people with CP will not walk

You can also enter into our drawing* for helping spread the word about CP. 

On Facebook, send us a screen shot from your feed of your updated cover photo and we will enter your name in our drawing.  Send a screen shot from a share of one of our CP Facts with at least five likes and we will enter your name again.  Share all 20 facts that we post this month (each with five or more likes) and we will enter you 20 times! 

On Instagram, share our CP Facts in your story, tag us and we will enter your name in our drawing for each tagged CP fact that you share! We will draw for two winners – one from Facebook, one from Instagram.

To participate in the Facebook drawing, send your screen shots to cpawareness@cprn.org. For Instagram, just tag us on your story on Instagram with every share of our CP Facts.

*Fine Print: You must have a shipping address in the United States to win. Two names will be drawn – one from IG participants and one from FB participants. The limit on entries (screenshots of shares and covers) is 30 for FB and 20 (story tags) for IG. Drawing will happen in the first week of April. Winner can chose between mug or t-shirt in an appropriate size. Shipping will take at least two weeks.

Datavant - Linking Healthcare Data

Data Linking Partnership Accelerates Discovery in Cerebral Palsy Research

Datavant - Linking Healthcare Data
Datavant – Leaders in Linking Healthcare Data

Yesterday the Cerebral Palsy Research Network announced a partnership with Datavant Corporation of San Francisco, CA, to enable linking of data sets to accelerate new findings in cerebral palsy (CP) research.  The CP Research Network will initially use data linking technology to facilitate the CP Genetics study we are launching next month.  Data linking allows researchers to combine types of information such as genetics and patient descriptions, from different sources to make new discoveries.  For example, participants in the CP Genetics study will provide saliva to Dr. Michael Kruer’s lab at the University of Arizona to identify new genes that are involved in causing CP.  That genomic data will be linked to the participants’ clinical characteristics, or medical description of their CP, found in our CP registry.  This linkage will allow us to find commonalities between genes and how CP appears in the patient population. 

“It is an exciting time in cerebral palsy research,” said Kruer, a neurogeneticist in the Barrow Neurological Institute at Phoenix Children’s and associate professor at the University of Arizona College of Medicine – Phoenix. “This landmark collaboration will enable new breakthroughs in CP genetics that have the potential to transform diagnosis and treatment.” 

Datavant’s data linking technology is unique because it allows this type of information to be connected independent of the timing of annual hospital visits for CP and the choice to be in the study.  Datavant software generates a unique set of identifiers per patient that stored with a medical record but are devoid of any personal identifying information.  The software can be used by new studies such as the genetics study to find matches between patient records and participants’ genes.  This matching process can help facilitate new discoveries in CP by connecting new study data to our CP Registry. The CP Research Network is actively pursuing other existing study datasets that could be linked with our registry to enable new findings to improve healthcare for people with CP. 

Narrow Website Partners with NCHPAD

Want to try a home wellbeing program?

We Have Ten Free Spots Available For A New Wellbeing Program!  Many people with cerebral palsy benefit from a multifaceted approach to managing their condition, combining regular therapies, exercise, and a healthy diet and lifestyle.

As we encourage our community to strive for the best possible outcomes we are delighted to partner with the National Center on Health, Physical Activity and Disability (NCHPAD) to bring its MENTOR program to the cerebral palsy community. 

MENTOR, which stands for Mindfulness, Exercise and Nutrition To Optimize Recovery, is a holistic approach is aimed at restoring, improving, and protecting health across the lifespan.

We are able to offer 10 members of CP Community the opportunity to participate in this free eight-week program throughout the months of April and May 2021.  Participants must be members of the MyCP community and 18 years or older.

During the pandemic, NCHPAD has pivoted from an onsite program for health and wellness, to virtual coaching for exercise, mindfulness and nutrition.  The MENTOR program combines adapted exercise, sport and recreation activities with practical healthy eating cooking classes and mindfulness-based stress management techniques to reduce mental health issues such as anxiety and fear.

“Our health coaches will work closely with the CP Research Network and community members to establish the most beneficial exercise, mindfulness and nutrition programs for people with CP,” says James Rimmer, PhD, Director of NCHPAD. “We are excited to partner on this pilot program with the CP Research Network.”

Participants will be provided with equipment to use at home which they will be able to keep at the end of the training. 

The program with be monitored by CP Research Network’s Mary Gannotti, PT, PhD, a professor of physical therapy at the University of Hartford and member of the network’s steering committee.

Interested members of the cerebral palsy community should send an email to mentor@cprn.org

Dr. Michael Kruer

Tune in to our next webinar — Genetic causes of cerebral palsy

We will kick off our ground-breaking “Genetic Causes of Cerebral Palsy” study with an informative MyCP webinar next Wednesday, March 10, at 8 pm EST. 

Dr. Michael Kruer

Dr. Michael Kruer, Dr. Michael Kruer, pediatric neurologist at Phoenix Children’s Hospital, studies the genetic causes of CP.

Dr. Michael Kruer, a neurogeneticist and pediatric movement disorders neurologist at Phoenix Children’s Hospital, will lead the study after receiving CPRN’s first publicly funded (NIH) grant to study the genetic causes of CP. 

Clinicians are hopeful that improved detection of a genetics origin for patients with CP will help individuals to gain treatments tailored to their unique situations faster and more efficiently. 

During the webinar, Dr Kruer will outline the function of the study as well as the types of findings that may be discovered and how those results may impact treatments. 

Three centers in the Cerebral Palsy Research Network will initially participate in the study; Phoenix Children’s Hospital, AZ, AI duPont Hospital for Children in Wilmington, DE, and Seattle Children’s Hospital, WA.  Nationwide Children’s Hospital in Columbus, OH, and Colorado Children’s in Denver, CO, have also expressed interest in participating. Other centers will be added during the course of the enrollment period that is set to end in 2023.

Dr. Kruer previously gave an overview of his research during a MyCP webinar in July 2020   Now, as he prepares to launch the study, he will share why genetics matter and detail recent findings about how genes play a role in the cause of CP. He will also outline who is eligible and how DNA samples will be collected. 

CP families receiving consultations at participating CPRN centers will be invited to enroll in whole exome sequencing analysis for the study which will examine the genetic factors between CP children and their parents. A hospital clinic visit is not necessary to enroll. Participants are required to have a diagnosis of CP. 

If you are not already signed up to view the MyCP webinar series, you can register here

CP Research Network t-shirt

Ways To Support National Cerebral Palsy Awareness Month!

As March kicks off Cerebral Palsy (CP) Awareness month and culminates in National CP Awareness Day on March 25, it gives us a great opportunity to strengthen our community and inform the general public about CP. 

Here are some ways you can support our work and the CP community: 

CP Research Network T-Shirt Store

1) Wear Green! Our community color is green so let’s make our presence known wherever we can! If you missed your chance to order last week, you can still get our shirt and support our common cause!

2) Be sure to log on to Instagram and follow us at cp_research_network. Tune in for our “Take Over Tuesdays” as CP advocates take over our account with their own unique content. Get people talking about CP using the hashtags #gogreenforcp, #researchcp, #cerebralpalsy, #cprnresearch 

3) Help us spread the word about our MyCP webinar series and save the date for Dr. Michael Kruer’s upcoming webinar on March 10 at 8 pm ET. This must-see webinar will outline the impending launch of Dr Kruer’s “Genetic Causes of Cerebral Palsy” study. Follow us on YouTube to get access to all of our MyCP webinars. 

4) Share our Facebook posts and blogs about #CPStories. Every month, we feature the stories of people in our community who are making a difference in CP research. Want to share your own story? Tell us about your experiences for future publication on the CP Research Network blog and social media! 

5) Make a direct donation to support our mission to optimize the lifelong health and wellness of people with cerebral palsy and their families through high quality research, education and community programming. Your generosity helps our community thrive. 

We all have unique experiences of what CP is, what it is like living with it, and the belief that outcomes can be changed for the better through research. Let’s get out there and shout about our wonderful community!  

Research CP Dystonia Edition

Don’t miss our 2021 MyCP Webinar Series!

Last year, more than 1,000 people logged on for our MyCP webinar series as we came together as a community to discuss cerebral palsy (CP) research. We are thrilled to announce our webinar series will return in 2021 with our first installment, Research CP: Dystonia Edition Results, scheduled for Tuesday, February 9, at 8 p.m. EST. 

Research CP embodies our efforts to engage stakeholders — community members, advocates, clinician and researchers — to set a research agenda that matters to the community.  It began in 2017 with our inaugural effort to establish the top research questions valued by the community. The result was published in Developmental Medicine and Child Neurology in 2018 and has set the research agenda for the CP Research Network.  In 2019, we launched Research CP: Dystonia Edition. We engaged more 160 people in educational webinars on the topic, community members and clinicians generated a prioritized list of unanswered questions about dystonia in CP

The Research CP: Dystonia Edition Results webinar is the summary of our findings from this initiative to set a patient-centered research agenda for dystonia in CP. It will be presented by CP Research Network Chief Executive Officer Paul Gross, Bhooma Aravamuthan, MD, DPhil, a pediatric neurologist from St. Louis Children’s Hospital in Missouri, Darcy Fehlings, MD, a developmental pediatrician from Holland Bloorview Rehabilitation Hospital in Toronto, Ontario, Canada and Michael Kruer, MD, a pediatric neurologist and neurogeneticist from Phoenix Children’s Hospital in Arizona.

To find out more, please visit our MyCP Webinar Series page and follow the instructions to sign up and secure your Zoom link to the online event. Webinars will also be recorded for later viewing.

Throughout 2021, we will bring you eleven monthly webinars featuring principal investigators from the CP Research Network, sharing concepts, development, and goals from their network research.  We will cover a broad spectrum of CP research ranging from genetics to care of adults with CP. The webinars are available for free to all CPRN community members and clinicians.

We encourage all who have participated in this important ongoing process to attend. We hope to see you there!

CPRN Merges with CP NOW

Cerebral Palsy Research Network Merges with CP NOW

We are excited to announce the Cerebral Palsy Research Network (CPRN) has merged with CP NOW, a nonprofit organization for parents and caregivers based in Greenville, South Carolina. 

michele shusterman and paul gross of the CP Research Network
Michele Shusterman and Paul Gross at AACPDM Austin (2015)

Merging CPRN and CP NOW is a natural extension of the longstanding strategic partnership between the two organizations. Previously, CP NOW President and Founder Michele Shusterman has worked as the director of community engagement for CPRN. In turn, CPRN Founder Paul Gross has served as a business advisor to CP NOW. 

Over the last five years, our organizations have collaborated on setting a patient-centered research agenda for cerebral palsy called Research CP, launching the MyCP platform and funding new research to address priorities from the Research CP agenda.  The new organization will conduct its nonprofit business under the name the “Cerebral Palsy Research Network” or “CP Research Network” for short. 

“It is exciting to plan the synergies of merging our two organizations,” said Gross.  “CP NOW has deep connections in the CP community and has produced award-winning education information for families.” 

The CP Research Network will benefit from the combination of community relationships with a large network of hospitals and clinicians engaged in advancing health outcomes for people with CP.

Logistically, Gross will lead the new organization as President and Chief Executive Officer and Shusterman will continue as a director on the board while advancing the education and wellbeing programs.  Jacob Kean, PhD, an associate professor at the University of Utah, will continue to lead the network’s data center and cerebral palsy registry efforts and join the board of directors.

The CP Research Network’s digital platform, cprn.org, will include the blog CP Daily Living, CP NOW’s award-winning CP Toolkit and Wellness Guide, and MyCP, a web property for the CPRN Community Registry and Forum. This digital resource will provide a single place for the CP community and clinician researchers to come together to advance health outcomes for people with CP and facilitate deeper community stakeholder engagement in research.

Many of these changes will be rolled out incrementally over the coming weeks, starting with some of our social media platforms.  Our website, which brings together all of the information from our four web properties, will be the keystone supporting our mission.

We hope you will join us in celebrating this pivotal moment for our two organizations. Together, as one entity, we will add a strong community voice to our research, educational, and wellbeing efforts.

Silver Linings

The Silver Linings of 2020 for Cerebral Palsy Research

Dear friends, 
Last year was a difficult year for everyone, not least the healthcare workers that power the advances we are seeking for people with cerebral palsy.   The adjustments to medical practices due to COVID-19 left clinical research efforts scrambling to adjust to the “new normal”. As lockdowns occurred, and in-person clinics and elective surgeries were limited, many in our community had to find new, versatile ways to carry out their work.  

If we can focus on one silver lining during this unprecedented time, it is how our collaborative network structure not only endured but thrived over the past year. Our investigators, who are predominantly clinicians, stepped up to the challenge, embracing a more virtual world and ensuring The CP Research Network held more meetings and advanced more research in 2020 than any prior year.   

Our energy went into three focus areas:   

  • strengthening our engagement of the community in research through our MyCP platform; 
  • advancing our research portfolio to improve outcomes;  
  • and starting to fulfill our strategic objective to translate knowledge by launching educational programming, and publishing and presenting our work.  

Community Engagement  
The MyCP forum continues to foster unique conversations between community members and clinician researchers in the pursuit of evidence-based medicine, best practices, and the prioritization of research. Our latest community prioritization project, Research CP Dystonia Edition (link), concluded with the engagement of more than 160 people from the clinical and patient community. This ensured we could quantify the top research themes for the perplexing condition of dystonia in CP. We will be publishing that data in due course.  

Research Successes  
We are thankful for the additional time many physicians gave us to revise our CP Registry data collection forms and their patient insights about spasticity, orthoses, devices, and physical therapy. In 2020, the registry grew from approximately 2,000 patients to more than 4,400 patients, ensuring we have a wealth of invaluable information for our research efforts.   

We were also proud to add three additional centers to the network, expanding our footprint and adding more passionate clinician researchers to our team. Welcome to Akron Children’s Hospital, Columbia University’s Weinberg Family Cerebral Palsy Center, and the Shirley Ryan Ability Lab. We are grateful for your input and expertise.  

Other wins for the year included three studies that received funding, two new studies launched in our Community Registry, and a second large scale clinical study submitted to the National Institutes of Health (NIH).  

We also expanded our pursuit of improved outcomes by launching three new improvement initiatives aimed at adult care, dystonia diagnosis, and hip surveillance.  

These are in addition to our existing improvement project to reduce infections from intrathecal baclofen pumps.  

Improvement science enables rapid test cycles to improve outcomes faster than traditional research methods. These projects build on our clinical CP registry which provides a foundation for measuring the impact of changes in the health outcomes for people with CP.    

Efforts to Educate 
The MyCP webinar series, a new initiative for 2020, enabled hundreds of community members and clinicians to learn about our studies directly from researchers and engage in meaningful dialogues about the progress, importance, and potential impact. 

The 2020 launch of a patient education blog series, featuring guest author Lily Collison, has brought a fresh, new voice to people with spastic diplegia as she shares her take on diagnosis, life, and treatment.  

The publication of our Cerebral Palsy Research Network Clinical Registry: Methodology and Baseline Report also gave the clinical research community detailed insight into our foundational work in CP.  

Looking forward to 2021  
We have big plans for 2021 as we launch our Genetics of CP study with Dr. Michael Kruer, research that was funded by NIH in 2019. Check out this recent article by Dr. Kruer which highlighted how the discovery of some genes related to CP has informed treatment for more safe and effective outcomes.  

As we navigate another exciting year of research and patient resources, we are preparing to announce new partnerships that will strengthen our research capabilities and broaden our relationship with the community.   

With five articles under development and more are on the horizon, the future is looking bright for our community.  

We hope you have a good year and please stay engaged with us in the CP Research Network.