Resources for children with cerebral palsy and their families, such as research and educational presentations regarding therapies, care, and a free cerebral palsy toolkit you can download!

Graphic of headshot as an x-ray in deep blue and an eyeball in pink with its connection to the sight region of the brain.

Cerebral Visual Impairment and CP

Headshots of Corinna Bauer, Karen Harpster and Michele Shusterman

Drs Bauer and Harpster and Ms. Shusterman will present on cerebral visual impairment.

The Cerebral Palsy Research Network will be hosting its May MyCP webinar on the topic of cerebral (or cortical) visual impairment (CVI) as a common co-occurring condition with cerebral palsy (CP). CVI impedes the brain’s ability to perceive and interpret what is seen through the eyes which can lead to developmental and learning challenges and may also impact fine and gross motor function. The webinar will be next Wednesday, May 22 at 8 pm ET. Corinna Bauer, PhD, Karen Harpster, PhD, OTR/L, and Michele Shusterman who are developing a study of CVI across the lifespan, will discuss basic concepts about CVI as well as the state of treatment and research for CVI in the CP population. Michele Shusterman will discuss CVI from the parent perspective.

Preliminary data indicates that people with CP are three times more likely to have visual impairments and as many as 87% of people with CP may have the visual perception dysfunction attributed to CVI. But vision and visual perception are currently NOT routinely screened for and/or evaluated as a standard of care for people with CP. There is also limited data available in the literature as to how vision is impacted in adults with CP.

Drs Bauer and Harpster will describe what is known and unknown about CVI and how they plan to study it using CP Research Network resources in both the pediatric and adult populations. Given the distribution of ages the webinar should be meaningful to parents and people with CP.

The CP Research Network has been engaged with the National Eye Institute of the National Institutes of Health to advise on the creation of a CVI registry. The Network is excited to present this new research concept and gather experience from community members to help shape the direction of our research and our registry. The webinar will be a mix of presentation and discussion.

Members of the community and clinicians are welcome to join this free webinar by registering in advance. The webinar will be recorded and posted to our YouTube channel.

Cerebral Visual Impairment (CVI) and Cerebral Palsy
A boy with cerebral palsy with white hair and sunglasses smiles riding his trike.

Cerebral Palsy Awareness Day Winners

Today, March 25, is the federally recognized Cerebral Palsy (CP) Awareness Day! We are excited to announce the winners for our third annual CP Awareness Month photo contest. In February, we began accepting submissions in three categories that we thought were important to represent our community: around town, diversity and celebrations & holidays. Each of the following submissions were selected by being the top three photos in these categories in votes out of 14,236 counted:

First Prize Winners ($100 each)

Around Town Diversity Celebrations & Holidays

Levi taking big boys steps in his gait trainer — featuring little brother holding up his ventilator circuit

A child with cerebral palsy smiles in his standing frame.

We are thankful for therapists! They give everything we need!! This is to help assist with standing!

A boy with cerebral palsy smiles at his red elf on a shelf.

Beckham loves his elf on the shelf, Charlie, who has a G-tube just like him!

Second Prize Winners ($75 each)

Around Town Diversity Celebrations & Holidays

Toddler twins in red and white pajamas with one playing roadkill

Identical twins –Everleigh running her sister Emerson over road kill — CP wont stop either of them

A young man with cerebral palsy in a maroon jersey plays street hockey.

Cerebral Palsy may bring challenges, but I always find ways to overcome them! (Avalanche Special Olympics Clinic)

A little girl in pink glasses and a red striped dress smiles while her cousin hugs her.

Kia celebrating her favorite holiday Fourth of July with her cousin

Third Prize Winners ($50 each)

Around Town Diversity Celebrations & Holidays

A toddler with cerebral palsy smiles on her red trike out on the sidewalk.

When it is nice out Anya loves to go cruising around on her bike. She is learning to keep her feet on the peddles and to use both hands to steer.

A boy with cerebral palsy in his stander wearing green and blue striped pajamas.

Grayson in his stander.

A young man in a wheelchair sits next to a neon sign advertisting his lemonade

Garrett’s Famous Lemonade: Every year he has a Lemonade Stand to raise money for different charities and an accessible van for us. Last year was for Curing Kids Cancer

Congratulations to each of these photographers and subjects for their selection and their prizes of $100 for 1st place, $75 for 2nd place and $50 for 3rd place.

Best Photo Overall

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 decision was SO hard as there were so many great photos. The winner is:

A boy with cerebral palsy and white hair smiles broadly out on his adaptive trike.

JOY-riding: 7 year old boy named, Ford. He is the brightest human being with white hair, and ocean blue eyes. He is riding his adaptive bike from Freedom Concepts around town.

Congratulations to Effie Parks for the photo of Ford “JOY Riding” for the $500 prize!

Honorable Mentions

The photos were so great this year that we decided to quadruple our funds for honorable mentions. Voting strongly favored young children in seven of the nine winners. The staff recommended a number of honorable mentions. Thanks to you all for these great photos.

Thank you to EVERYONE that participated – submissions, shares and votes. We hope the sharing of pictures and our awareness banners helped you all create awareness for CP and celebrate our vibrant community! Wear your green proudly today! We will be in touch about your prizes over the next week!

Our logo featuring a C and a P in shades of green forming a support ribbon for Cerebral Palsy

Cerebral Palsy Awareness Month 2024

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:

  1. In February, we launched our 3rd annual CP Awareness photo contest for your favorite picture in each of three categories on our website. We will be awarding a total of $1,300 in cash prizes to the winners on national CP Awareness DayMarch 25th! You have until March 15th to submit your photo.
  2. Starting March 16 you can vote – and share them on social media to help them gather more votes.
  3. We have CP facts as Facebook banners that you can download and use to spread the word. We will be posting CP facts throughout the month on our Facebook and Instagram – feel free to share those!
  4. You can buy CP Research Network merchandise at our store and wear green through the month!
  5. You can make a donation to the CP Research Network or start a Facebook fundraiser for us!

Please help us in our efforts to spread awareness for cerebral palsy!

Research CP Awarded Investigator Publishes on Speech and Language

A cover of the American Journal of Speech Language Pathology with a deep blue header and a table of contents

Congratulatoins to Dr. Allison whose research, funded by the CP Research Network, was recently published in the American Journal of Speech-Language Pathology.

We are thrilled to congratulate Kristen Allison, PhD, CCC-SLP on her recent publication, “Relation of speech-language profile and communication modality to participation of children with cerebral palsy,” in the American Journal of Speech Language Pathology on January 12, 2024. This is the twelfth publication for the network and, is the result of research funded by the CP Research Network for its Research CP grant program in 2019. It provides a unique analysis of the effects of speech and language impairments on participation for children with CP.

Dr. Allison directs the SMILE Lab at Northeastern University where she studies speech motor impairment and its effect on children. In 2019, the CP Research Network ran a competitive award program to advance research addressing important issues from our Research CP patient-centered research agenda. Dr. Allison’s proposed study Speech and Language study was the top ranked submission and was awarded the funding.

The study, conducted in part through our Community Registry hosted on MyCP, engaged parents to assess and understand their children’s speech and communication skills in conjunction with their participation in various life events. Participation was identified as a key issue in our Research CP program. Using validated parent reported measures of speech and language capabilities combined with assessment of the child’s involvement in activities, Dr. Allison was able to determine important new findings that could improve a child’s participation, a key component to quality of life. A significant conclusion of the research was that early intervention with augmentative and alternative communication devices for certain children could improve participation opportunities.

Dr. Allison presented her preliminary findings in a MyCP webinar in 2020. Her final manuscript is available to subscribers of the American Journal of Speech Language Pathology or to members of the MyCP platform
(You must be logged into your MyCP account. )

MyCP logo

Participate in discussions or research on CP.

 

 

Four contestants featured from last year's contest.

Cerebral Palsy Awareness Photo Contest 2024

An adaptive basketball coach in a wheelchair lifts a boy with cerebral palsy overhead in his own chair to dunk a basketball

Last year’s Best Overall winner: Dawn McKeag: Slam dunk!

In advance of Cerebral Palsy Awareness Month, which runs each year throughout the month of March, the Cerebral Palsy Research Network is introducing the third annual Cerebral Palsy Awareness 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 for submissions and will award $1,000 in total cash prizes to 10 winners on March 25, 2024 – the day officially designated as National CP Awareness Day in the United States.

“Since we started this contest in 2022, the community has rallied each year to create awareness and to help us build a library of authentic photography about people with CP” said Paul Gross, President and CEO of the CP Research Network. “The community has openly let us into and to share their lives in a way that is truly meaningful for CP Awareness.” The CP Awareness Photo Contest seeks to celebrate the lives of people with CP in a way that can be used in the CP Research Network’s variety of education, awareness and wellbeing programs on our website, on social media and our marketing materials!

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:

Category 1st
Prize
2nd
Prize
3rd
Prize
Celebrations and holidays* $100 $75 $50
All ages “around town”* $100 $75 $50
The diversity of our community* $100 $75 $50
Honorable mentions** 5 x $25
Best Overall* $500

* These categories are awarded based on the highest number of votes by the close of the contest.
** These categories are award by an internal vote by the CP Research Network staff.
Special consideration will be given to photos in landscape format.

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!

 

To be a contestant and be eligible to win, you must be logged into your MyCP account. If you are not a member, you may join for free as an advocate to participate in the contest. MyCP offers a number of benefits for free if you join as a community member, e.g., a person with CP or a parent/caregiver, but you do not need to share more than your name and email address as an advocate.

MyCP logo

Participate in discussions or research on CP.

Night sky with colorful fireworks

Happy New Year! 2023 in Review

As we turn the page on 2023, we look back with much appreciation for all that our extended community is doing to accomplish our mission of improving the health and wellbeing of people with cerebral palsy (CP) and their families. Many of you have engaged in the work of improvement in care and new knowledge generation through creation of or participation in studies. We thank you all for your efforts, your willingness to share ideas and resources with your colleagues and researchers, and your unrelenting drive to make life better for people with CP.

We kicked off the year with an impactful strategic partnership with Cerebral Palsy Alliance Research Foundation (CPARF) which is the largest private funder of CP research funding in the United States and a disability technology accelerator. The CP Research Network has fundraised together with CPARF as part of their STEPtember campaign and CPARF has supported all of our existing research efforts as well directly funded three new studies – two for adults and one for children.

Our research program benefited from the guidance of our data coordinating center at the University of Pittsburgh. A big shout out goes to Dr. Stephen Wisniewski and his whole team at Pitt for their innovative perspective on study designs, advancing our data collection and reporting, and increasing the scalability of network to enable more clinicians and community members to participate in making new discoveries in cerebral palsy. We also benefited from the addition of Dr. Joyce Trost to our research team. Dr. Trost leads our registries which have grown substantially in 2023 and underpin all our work. Alongside her, our scientific director Dr. Kristie Bjornson and Quality Improvement director Dr. Amy Bailes, strengthen our research pipeline and care improvement efforts with their related expertise. Together this team has overseen the development and advancement of 31 studies and improvement efforts including 20 newly initiated THIS year!

What does all this research activity mean to you? First that the CP Research Network is serious about changing outcomes through care for people with CP of all ages. For adults, the network is very focused on pain and its impact on function. Participating centers increased the assessment of pain in adult visits from 24% to over 90% this year and have been funded by CPARF to standardize the classification of that assessed pain so that it can be treated effectively. For children, the network is improving the dystonia diagnosis and working toward network surveillance of hip dislocation which can be a painful result especially for children with CP that are less mobile. Our improvements in care are being built into the electronic medical record system to make the clinical assessment of pain, diagnosis of dystonia and surveillance of hips, part of the standard of care for patients at CP Research Network hospitals. Three new publications this year highlighted just some of the research and improvement in the network including the effort to reduce infections after baclofen pump surgeries, chronic pain in adults, and a study of practice variation in selective dorsal rhizotomy.

Our education and engagement programs have seen large increases in enrollment in MyCP – our interactive web portal for personalized information and participation in research. Our monthly MyCP webinar series has engaged hundreds of community members in live discussions and gathered more than 7,000 views on YouTube this year. Our CP Toolkit continues to be our most often downloaded educational piece helping families understand the meaning of a CP diagnosis.

Finally, our partnership with the National Center for Health, Physical Activity and Disability provided incredible health and wellness opportunities to adults with CP. While only 16 people took advantage of the fantastic MENTOR program that teaches participants about mindfulness and how to get sufficient adaptive exercise and nutrition for improving one’s health, these MENTOR participants raved about the classes and the result, so we hope to triple the number of participants in 2024!

The timeliness of MENTOR has been invaluable to me, given my life stage, CP journey, and the additional impact of my other health conditions. The program has equipped me with the necessary skills to manage these challenges, such as mindset, activity levels, and nutrition. Additionally, the one-on-one opportunities to meet with staff have helped me fine-tune my approach.
Marji – MENTOR program graduate

We have exciting plans for 2024 including much deeper involvement of the community in our research program starting with opportunities to attend our annual investigator meeting in April and participation as co-investigators on developing projects. We anticipate a lot of progress, improvement, funding and results from our myriad research projects under development. And at least two new toolkits will be launched this year!

A banner about nutrition in cerebral palsy features a colorful bowl of vegetables and legumes.

Growing Up Well with Cerebral Palsy: Improving Nutrition, Health, and Wellbeing

A balding man with dark rimmed glasses smiles broadly in a white lab coat with a colorful striped tie.

Dr. Richard Stevenson, a developmental pediatrician at UVA, will present on the role of nutrition in health of children with cerebral palsy.

The Cerebral Palsy Research Network is excited to announce its November MyCP webinar entitled “Growing Up Well with Cerebral Palsy: Improving Nutrition, Health, and Wellbeing” with Dr. Richard Stevenson, Developmental Pediatrician and Division Head – Neurodevelopmental and Behavioral Pediatrics at the University of Virginia Health. The webinar will take place on Tuesday, November 14, at 8 pm ET. Dr. Stevenson has been leading efforts in the network to investigate the role of nutrition in overall growth and health for children with cerebral palsy (CP).

Growth is considered an integral indicator of nutrition, health, and wellbeing in children. The regular measurement of growth and comparison to reference data is a key component of health maintenance in children across the globe. In general, if a child is growing well compared to their peers, then they are considered to be disease free, adequately nourished, and living in a safe and “good enough” environment. Children with cerebral palsy are smaller in stature compared to their peers and in proportion to the severity of their motor impairment. But this raises many questions:

  • Is this growth pattern a problem that is modifiable?
  • Is the difference in growth due to poor nutrition, due to medical co-morbidities, due to poor activity levels or other factors that can be manipulated?
  • Does this difference in growth for children with CP matter?
  • Is it associated with poor health or with differences in quality of life?

A part of the overall differences in growth in people with cerebral palsy is the manner of growth and maturation of bone and muscle, and that bone and muscle problems (e.g. spasticity, contracture and osteoporosis) contribute to chronic pain and decreased mobility over the lifespan. Could these long-term problems be mitigated through childhood management of diet and physical activity?

Dr. Stevenson will review current knowledge on growth and nutrition and the relationships among growth, health, physical activity, and wellbeing in children with cerebral palsy. He will also discuss knowledge gaps and opportunities for additional research and improvements in how we care for children with cerebral palsy with the goal of improving health and quality of life across the lifespan. Dr. Stevenson also looks forward to community input on these questions and more. To join the webinar, please register using the form below or at https://cprn.org/mycp-webinar-series/. A recording of the webinar will be posted to our YouTube channel within 24 hours of the presentation.

Growing Up Well with Cerebral Palsy
The American Academy for Cerebral Palsy and Develomental Medicine program cover for its 2023 annual meeting

Chicago Bound — AACPDM Annual Meeting

Clinicians and researchers who direct their work toward improving care for individuals with cerebral palsy (CP) will gather in Chicago, Illinois next week for the meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM). The CP Research Network will have a significant presence and will demonstrate its growing impact on the field of CP care through two mini-symposia, one morning session, four free paper presentations and three scientific posters. Network leadership will also be hosting an informational session on the evening of September 11th where clinicians and researchers interested in joining or learning more about how to engage with the CP Research Network.

CP Research Network CEO Paul Gross with facilitate two discussions (mini-symposia) about how the resources from the collaborative network can advance discovery. The first will focus on understanding national and international varied approaches to surgical decision making for selective dorsal rhizotomy (SDR) which may be affecting outcomes. The panel which includes several CP Research Network investigators, Bhooma Aravamuthan, MD, DPhil, Jeffrey Leonard, MD, Tom Novacheck, MD, Joyce Oleszek, MD, and Brandon Rocque, MD, MS will share data collected at several large tertiary care centers and reflect on the variations in SDR practice across the centers.

The second symposia led by Paul Gross and including network investigator Michael Kruer, MD will highlight how leveraging rich data sets like the one being built through the CP Research Network can accelerate discovery as well as bring along a new generation of young investigators. They will discuss our community and clinical registries, the sources of data available to researchers, and the practical realities of comparing and linking the data to generate new knowledge. They will also touch on how these large data sets have opened opportunities for a new generation of young researchers who are now presenting papers and posters at the meeting including Elizabeth Boyer, PhD, Cristina Sarmiento, MD, Brandon Rocque, MD, Sruthi Thomas, MD, PhD, Shannon Strader, DO, MS, and Bhooma Aravamuthan, MD, DPhil. The morning seminar presentation entitled, Accessing the CP Research Network Registries for Community Research and Secondary Analyses will complement the symposia and will feature Kristie Bjornson, PT, PhD, Mary Gannotti, PT, PhD, Paul Gross and Brandon Rocque. At this seminar, researchers will learn how to apply to access data generated by the CP Research Network and the types and quantity of data available in both the clinical and community registries.

Free papers and posters that can only be accomplished through the power of multi-center studies are being presented including: SDR practice variation analysis by Brandon Rocque, MD, MS, Botulinum toxin practice variation in North America by Sruthi Thomas, MD, PhD, and Multi-center improvement in dystonia detection in people with CP by >Bhooma Aravamuthan, MD, DPhil. By by providing an infrastructure for these multi-centered, rich data analyses the CP Research Network will speed up research discovery and impact clinical care in the near future.

Our community registry is fosters unique research that includes the patient’s voice through self reported experience. It has also given several young researchers the opportunity to grow their careers including: Consequences of Falls by Elizabeth Boyer, PhD, Adult Cerebral Palsy Patient-Reported Outcomes from a Community Registry: Follow-Up Report on the Impact of Gross Motor Function and Age on Functional Decline by Cristina Sarmiento, MD, Adult Cerebral Palsy Patient-Reported Outcomes from a Community Registry: Follow-Up Report on the Chronic Pain Findings, Cristina Sarmiento, MD, and CP Sensory study by Bhooma Aravamuthan, MD, DPhil. The opportunity to gain the lived experience voice with many individuals with CP is a true value to investigators who do not otherwise have the vast connections of the CP Research Network.

The informational session is an open house style opportunity for individuals unfamiliar with the CP Research Network who want to ask questions about how the learning health network can be leveraged for research and improving quality care of people with CP. There will be opportunity to interact with CP Research Network leadership including Paul Gross, Founder and CEO, Michele Shusterman, Founder and Education Director, Kristie Bjornson, PT, PhD, Scientific Director,and Joyce Trost, PT PhD the new Registries Director. Several site investigators will be there as well including Sruthi Thomas, MD, PhD of Texas Children’s Hospital and Brandon Rocque, MD, MS from Children’s Alabama. You can learn more about what makes the CP Research Network unique, the benefits of membership, and about the full-service data coordinating center which includes statistical support for network related projects. You can ask about membership fees and how they support enhanced knowledge sharing, quality of care projects for benchmarking, collaborative research and professional development with your peers.

We look forward to connecting with you in Chicago!

Make a Difference: Join Our STEPtember Fundraising Team

A blue tile with exercise icons in the background and text to emphasize there are more than 80 ways to move.We invite you to join us to make a difference in cerebral palsy (CP) by helping to raise funds for CP research through STEPtember. STEPtember is an activity-based peer-to-peer fundraiser that happens throughout the month of September. Donations support us through our strategic partnership with Cerebral Palsy Alliance Research Foundation (CPARF) as they are the leading private funder of CP research in the United States. Participating in STEPtember has multiple benefits:

  • You will advance research for CP,
  • You will raise awareness about CP,
  • You will stay active and be able track your progress.*

We have created a CP Research Network team for STEPtember. You may join our team as an individual or form your own team under the CP Research Network team (you will see these options on our join page). STEPtember comes with an iPhone app to help you monitor and share your activity on social media or with other team members. And while the name includes “step”, you get step credit for any activity including biking, rolling, swimming and lots of other forms of activity and exercise. It’s a great way to enhance your fitness and have challenging fun with friends, family and co-workers.

Registration is now open. Build your team in August and get ready to get more active and start fundraising in September. Get recognized with shirts and jackets for your fundraising achievements! Please join us and help make a difference in CP research!

* We really want to emphasize that even though the name is “STEPtember”, we support more than 80 ways to stay active and transform it into step equivalents to make the opportunity available to people of all abilities.

A small breakout group of clinicians gathers around a table to advance CP research

Inside the CP Research Network Annual meeting

Clinicians sit classroom style for a keynote lecture in front of a large screen.

The keynote on “Efficiences in Clinical Trial Design” was delivered by Dr. Stephen Wisniewski.

Earlier this month, the Cerebral Palsy Research Network held its annual investigators’ meeting in Wilmington, Delaware. It was graciously hosted by AI duPont/Nemours Children’s Hospital. This annual face-to-face meeting is critical to advancing our Research CP agenda, connecting investigators with community members and funders, and re-energizing our research community to answer the questions that our community values most. This month’s MyCP webinar will be on Tuesday, May 30, at 8 pm ET and share an inside view of our annual meeting from the perspective of community participants.

Community members Jocelyn Cohen, Gina Rolle, and Nina Miller all attended the annual meeting and will participate in the webinar to share their perspectives on the meeting and the work of the network. At the wrap up, Ms. Cohen expressed her feelings about the meeting to us. “I want all the clinicians here to know that I’m grateful for the work you’re doing, for your openness toward collaboration, and for your willingness to have these conversations, said Ms. Cohen. “I’m excited to connect with you professionally and personally.” Ms. Cohen attended the meeting in a dual role as she is both an adult with CP and the Vice President of Communications and Engagement with our strategic partner Cerebral Palsy Alliance Research Foundation.

Paul Gross, President, CEO and Co-founder of the CP Research Network will give an overview of the meeting and how the agenda relates to the network’s strategic plan. Mr. Gross will be followed by Kristie Bjornson, PT, PhD, the Scientific Director, who will give an overview of the registry and the research discussed at the meeting. Our panel of participants will then share their experiences and learning from the meeting.

The annual meeting had 50 attendees in total including researchers from every discipline that treats people with CP including developmental pediatrics, gastroenterology, internal medicine, neurology, neurosurgery, occupational therapy, pediatrics, physical medicine and rehabilitation, and physical therapy. Research funders in attendance included a representative from the National Institutes of Health, the CP Foundation, Cerebral Palsy Alliance Research Foundation and United Cerebral Palsy. Attendees participated in general sessions about our registries and efficiencies in clinical trial design as well as numerous small group working sessions on topics including adult care, complex CP, dystonia treatments, genetics, grip strength, imaging, nutrition and growth, selective dorsal rhizotomy, and surgical decision making. The social highlight of the meeting was dinner hosted by Dr. Wade Shrader and his wife Carol at their lovely home in Wilmington.

Next Wednesday’s webinar will be unique in our series as it brings our research efforts to the community through the eyes of fellow community members. Please join us by registering in advance. Webinar Series subscribers will receive a link to the webinar in email prior to the event. As usual, the webinar will be recorded and posted to our YouTube channel within 24 hours of its airing.