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 Registry Development

The expert panel participants stand in front of a screen of virtual participants.

Participants in the National Eye Institute’s expert panel gather for a group picture on Sunday, June 23.

Cerebral Palsy Research Network Chief Executive Officer Paul Gross and Scientific Director Kristie Bjornson, PT, PhD were invited to participate in an expert panel to provide guidance to the National Eye Institute (NEI) in its effort to develop a registry for cerebral visual impairment (CVI). This event was held on Sunday, June 23 at the Perkins School for the Blind in Boston, MA. The attendees included NEI program officers, leading clinicians and researchers in the field of CVI and parents, teens and adults with CVI.

Two CP Research Network affiliated investigators, Drs Corinna Bauer and Karen Harpster, also participated in the meeting which was intended to review the purpose, aims and initial data collection envisioned for the registry. The opportunity to participate in this foundational meeting will allow the CP Research Network to align future data collection for CVI with the NEI registry to expand research possibilities for people with CP and CVI together. Drs Bauer and Harpster are currently planning a study of CVI over the lifetime for the network’s Community Registry. They presented a MyCP webinar with network Co-founder Michele Shusterman in May 2024.

The invitation from NEI to attend is an honor and reinforces our belief in our vision to continue to expand our national registry for cerebral palsy. Being identified as a sought out leader in the field of research registries is an important affirmation of our work in developing clinical and community registries as an integral part of the CP Research Network.

Functional Changes, Pain and Aging with Cerebral Palsy: A New MyCP Webinar

Ed Hurvitz, MD, Mary Gannotti, PT, PhD, and Jodi Kreschmer, MSW will present on pain and functional changes in adults with CP

The Cerebral Palsy Research Network is excited to announce that this month’s webinar will be on Monday, June 24 at 8 pm ET and it will focus on functional changes in adults with cerebral palsy (CP) and research findings about functional changes and pain. The webinar will be presented by the CP Research Network adult study group co-chairs Ed Hurvitz, MD, Professor, Physical Medicine and Rehabilitation and Mary Gannotti, PT, PhD, along with researcher and CP Research Network Community Action Committee member Jodi Kreschmer, MSW. We have organized the Adult Study Group to advance research for adults with CP.

There is a lack of information about what happens to adults with cerebral palsy as they get older. Many adults with cerebral palsy and clinicians are not aware of how and why their abilities to use their arms, legs, and to communicate may change with age. We will describe some of the reasons for these changes uncovered by our research and what questions you may want to ask your providers.

There is very limited information about how people with different abilities, with different clinical characteristics, and from different backgrounds experience functional changes and pain when they have cerebral palsy. The Cerebral Palsy Research Network Community Registry Adult Surveys on Function and Pain provide some insight about this. Please help us improve our understanding of what people with CP are experiencing in adulthood by becoming a part of our community registry. The registry gathers data on people with CP and their self-reported experiences. Our MyCP Webinar Series is intended to translate those research findings to be meaningful to community members.

The topics covered in our webinar will help participants be able to identify the reasons why adults with CP may experience functional changes or pain with aging and describe how common these changes are among other adults with CP. In addition, they will learn to identify ways to reduce the impact of pain and functional decline.

We will also discuss exercises and pain treatments you may be able to do at home, and provide you with resources to help you manage your health. We are hoping people will be inspired to participate in the Community Registry Adult Surveys on Function and Pain to help us gain more insights into supporting adults with cerebral palsy

Interested community members and clinicians can join this free webinar by registering with this link or below. Subscribers to our monthly webinar series will receive a link in email this coming Friday, June 21.

Functional Changes, Pain and Aging with Cerebral Palsy
Dr. Gannotti with long dark hair, purple sweatersand glasses explains her cerebral palsy study to a community member.

Article Details Successes, Challenges, and Future Directions of Our Community Registry

Dr. Gannotti standing in a purple sweater explain her work in cerebral palsy to a mom and adult son in a wheelchair

Dr. Gannotti stands among three of her five scientific posters explaining her work to community members who attended our annual meeting.

The Cerebral Palsy Research Network congratulates Dr. Mary Gannotti on her recent publication, “Cerebral palsy research network community registry adult surveys on function & pain: Successes, challenges, and future directions” in the Disability and Health Journal. This article is the third in a series describing the preliminary results from surveys gathered under her leadership in the network’s study of wellbeing and chronic pain in adults with cerebral palsy (CP). This article describes not only the creation of our Community Registry, but also the development and execution of this study with adults who have CP.

Dr. Gannotti has championed the longitudinal study of adults with CP since the founding of the network in 2015. This publication provides an overview of the multi-year process to build a core set of patient reported outcome measures that capture the health of wellbeing of adults with CP. In addition, it describes some key high-level findings about chronic pain and how these findings have led to numerous additional studies that are currently active in the network including two different studies of lower back pain. Dr. Gannotti has been proactively promoting the potential for secondary analysis of this dataset and a tireless mentor of junior faculty inside and outside of the network. The prior two publications from the adult study were first authored by Dr. Cristina Sarmiento who is a physical medicine and rehabilitation clinician at Colorado Children’s and University of Colorado Health System.

The commentary on the registry also describes challenges in creating an online registry such as diversity issues across race, gender, socioeconomic status. She balances descriptions of the challenges with planned efforts to overcome the challenges. Dr. Gannotti has secured funding both from durable medical equipment provider Rifton and the American Physical Therapy Academy to invest in overcoming these weaknesses by expanding recruitment methods.

Members of the community interested in reading the article can review it here until July 15, 2024 at which point it will only be available a fee or to subscribers to the journal.

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
Dr. Sarmiento with brown hair pulled back in a navy blue blazer and a broad smile

Adults with CP and Functional Decline

Cerebral Palsy (CP) is often defined in part as an early non-progressive brain injury or disturbance in neurological development that impacts the areas of the brain responsible for movement, posture and coordination.  There may be other areas of the brain affected as well. But as adults with lived experience with CP describe, the description of a static brain injury distracts from the reality of the downstream effects that it causes on the body.  The CP Research Network was founded in part to increase the amount of research about adults with CP.  Our patient-centered research agenda, Research CP, that was published in 2018 made clear that adults with CP wanted research to be focused on issues surrounding aging and functional decline.  In 2019, under the leadership of Drs. Mary Gannotti  and Deborah Thorpe, and in collaboration with many adults with lived experience, the CP Research Network launched its Adult Study of Wellbeing and Pain as its first study in our Community Registry.  This longitudinal collection of surveys is intended to capture current health and wellbeing for participating adults with CP and track it over time.   While the vast number of people living with CP are adults, recruiting sufficient numbers and diversity has proven challenging.  But with funding support from Rifton and the American Physical Therapy Association, and in collaboration with the CP Foundation, we have amassed enough participants to begin publishing some preliminary findings.

 

Dr. Sarmiento smiles broadly with her brown hair pulled back, in a navy blazer and light colored swoop neck blouse.

Dr. Cristina Sarmiento is a rising young investigator in the CP Research Network with her second network publication and an Accelerator Award granted in October. She focuses on issues of transition and adults with cerebral palsy.

In November 2023, Dr. Cristina Sarmiento, a young investigator in our network and Dr. Gannotti, an investigator focused on adults with CP, published initial findings on chronic pain in adults with CP.   More recently, Drs. Sarmiento and Gannotti published again on the findings related to functional decline in adults with CP in the Disability and Health Journal.   Their analysis shows that functional decline in mobility was the most common symptom reported among the adults surveyed.  Functional decline was most pronounced in Gross Motor Function Classification System levels III and IV.  These findings are just a few of the high-level results described in the article.  The article is available for free viewing until April 21, 2024.  Thanks to Dr. Gannotti for her persistence in recruiting for this study and for mentoring  Dr. Sarmiento and other junior faculty. Together they have turned our data into valuable information for the community and for researchers to understand more about what adults with CP are experiencing with their health and wellbeing.

We want to hear from you!

The adult study of wellbeing and pain mentioned in this blog post is still recruiting and interested participants can learn more or sign up at our community portal: MyCP.org.

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!

Artificial Intelligence and Cerebral Palsy Research

 

Dr. Vesoulis in a white lab coast, short wavy hair and a red tie smiles for his professional headshot.

Dr. Vesoulis will be leading the webinar on the use of Artificial Intelligence in Cerebral Palsy research.

Next Monday, March 4, at 8 pm ET our MyCP webinar features Zachary Vesoulis, MD, MSCI who will describe the Cerebral Palsy Research Network’s initial exploration into using artificial intelligence (AI) to make new discoveries in cerebral palsy (CP). Dr. Vesoulis will discuss how we are planning to apply the AI concept of “deep learning,” a model that processes information similar to the human brain. This method would be applied to both our CP registry and brain images to predict outcomes in CP. Dr. Vesoulis, a neonatologist at Washington University in St. Louis and a researcher funded by the National Institutes of Health (NIH), has developed a plan to use the network’s large cache of brain magnetic resonance images (MRI) to discover previously unseen relationships between MRIs of the brain and clinical findings in our registry. These relationships may allow us to better understand and perhaps predict different aspects of CP like issues with muscle tone or the type of movement disorder that may affect the individual, or common co-morbidities like epilepsy, learning difficulties, or vision impairment.

Dr. Vesoulis joined forces with network Chief Executive Paul Gross to develop the study. While Dr. Vesoulis has expertise in neuroimaging, this study involves significant expertise in and infrastructure for implementing the deep learning model of AI. Gross’s roots at Microsoft have led to interest from Microsoft’s AI for Health team. And the University of Pittsburgh, where our data center is hosted, has significant AI experience to address the needs of the project. Other academic centers have expressed interest in collaborating in this next generation type of research as well.

Interested members of the community can join the meeting by registering below. After the presentation, Dr. Vesoulis will be available to answer questions. The webinar will be recorded and available on our YouTube channel following the presentation.

Registration
Please provide your first and last name.
We will send the webinar pre-registration instructions to this address.
Register for the whole series (we will email you the details)?

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.