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!

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.

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.

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!

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.

Award: Study of Pain in Adults with Cerebral Palsy

Headshots of two women with shoulder length brown hair and glasses smiling broadly.

Cerebral Palsy Research Network leaders Drs Bailes and Gannotti will lead a study of adult pain classification funded by CPARF.

The Cerebral Palsy Research Network has been awarded funds for a three-year study in the classification of pain for adults with cerebral palsy (CP). This study was the subject of October’s MyCP webinar. Classification of pain in adults is fundamental to identifying proper treatments and improving outcomes. Congratulations to co-principal investigators Amy Bailes, PT, PhD and Mary Gannotti, PT, PhD who will lead the team which includes the rest of the members of the Adult Care Quality Improvement.

The CP Research Network applied to Cerebral Palsy Alliance Research Foundation (CPARF) for this award earlier this year. CPARF’s research funding was a very competitive cycle this year and we are honored to receive this funding to advance our essential study of pain in adults with CP. We expect that this work will have a very broad impact on adult care by beginning to address pain, one of the most important issues identified through our Research CP program — our community created research agenda.

The study team comprises clinician investigators from Columbia University, Nationwide Children’s Hospital which has an adult outpatient clinic, University of Michigan, and the University of Colorado. This team has already demonstrated that it can improve the care of adults across multiple centers with its Adult Care QI initiative. This effort led to a substantial increase in the assessment of pain across participating CP Research Network centers from 24% of the time to over 90% percent of visits. Now the group is planning the next important step in the systematic treatment of pain – classifying it accurately as a critical step to effective treatment. The study will begin with a Delphi process to identify the best tools to classify pain during a clinical visit. The appropriate classification of an individual’s pain will enable clinicians to choose the most appropriate treatments.

We look forward to the successful execution of this grant and transforming how pain is treated in adults. People interested in the background for the study can watch October’s MyCP webinar with the study team. Adults wanting to participate in our research should either join MyCP to regularly contribute your lived experience to our research or take our initial adult study of wellbeing and pain.

a blurred image conveying rapid acceleration in a train tunnel.

Priorities in Adult Cerebral Palsy Research

Professional headshots of four investigators smiling for a cerebral palsy adult study.The Cerebral Palsy Research Network, in partnership with Cerebral Palsy Alliance Research Foundation (CPARF), has awarded its first Accelerator Award, a new internal funding program supported by CPARF to advance critical research questions more quickly. This particular award will be used to prioritize research questions about adults with cerebral palsy (CP). The study, entitled “Priority Setting for Multi-center Research Among Adults with CP” will be conducted by leading investigators focused on adult research – Cristina Sarmiento, MD, (principal investigator), Ed Hurvitz, MD and Mary Gannotti, PT, PhD (consultants) in partnership with Jocelyn Cohen, a community member co-investigator. The study team will lead a series of focus groups around the country to gather input from the community about which health concerns are most pressing to them. This study will build upon the original patient-centered research agenda created through the Research CP program.

The main objectives of this award are to develop a community prioritized set of questions to research through a multi-center clinical trial. The priority setting process will use qualitative methods (a process to find common themes in transcribed answers from focus group participants). Participating community members will be drawn from the CP Research Network’s MyCP community engagement platform and from the CPARF community. They will be involved in every stage of the research process and will have the opportunity to be co-investigators for the study that follows.

Our December webinar will feature the investigative team for this grant. They will provide a more in-depth overview of the planned research and how community members may become involved. This will be a separate webinar from this evening’s webinar on pain classification though it will feature some of the same speakers. Subscribers to our MyCP webinar series will receive an email with the webinar instructions when it is announced in December.

A woman smiling broadly with long blond hair, dark round glasses and a multi-color blouse.

Dr. Joyce Trost Hired As Director of CP Registries

A woman smiling broadly with long blond hair, dark round glasses and a multi-color blouse.The Cerebral Palsy Research Network hired Joyce Trost, PT, PhD into the role of Registries Director. Dr. Trost has 32 years of clinical, research and administration experience with an expertise in gait and motion analysis serving as the Director of Research for 15 years at Gillette Children’s. She will be responsible for managing the growth, quality and research output of the CP Research Network’s two cerebral palsy registries. Our clinical registry captures data about patients seen at CP Research Network clinical sites and our community registry captures data about the lived experience with CP outside of a hospital setting. Dr. Trost started with the network on August 21, 2023.

“We are honored to have attracted such a talented and experienced CP researcher to our team,” said Paul Gross, President and CEO of the CP Research Network. “Dr. Trost brings a depth of additional skills to the role that we envisioned for our registries that will further strengthen our network.”

Dr. Trost began her career as a physical therapist and eventually went on to get a PhD in Rehabilitation Science. As the Director of Research at Gillette, she established, directed, and drove the strategy for Pain, Spine, Orthopedics, Rehabilitation, Neuroscience, Motion Analysis, and Health Services Research programs led by MD/PhD dyads. She developed a portfolio of funding that included industry, grant and philanthropy, cultivated relationships with many different collaborators, and prioritized scientific rigor and systematic data collection processes.
In conjunction with team members, helped design Gillette’s Center for Gait and Motion Analysis database, built Sponsored Project Administration, and revolutionized the organization’s research governance, compliance, and study start-up process while shaping the organization into a research leader in cerebral palsy and pediatric rare diseases.

A passion of hers is involving those with lived experience in the research process. Her interest in physical therapy and exercise’s impact on muscle was sparked as a pre-teen when she had a life altering figure skating accident. Her ongoing research interests are in early intervention and outcomes of exercise and interventions on muscle and function for those with cerebral palsy. In her personal life, she is married, the mom to 4 young adults, and spends free time working on their farm, fishing or out on bike trails with her family.

Accelerating our mission with new board members

The Cerebral Palsy Research Network is all about bringing together people from across the patient, family, medical and research communities to create connections that lead to shared understanding and improved wellbeing for people with CP. It’s why “network” is in our name.

As a network, people are at the heart of what we do, and that’s especially true when it comes to the strategic guidance and expertise provided by our board.

Over the past few months, we’re delighted to have grown our board to welcome three new members:Garey Noritz, MD., David Browdy, BS, MBA, and Michael Pearlmutter, BS, MBA.

Though Dr. Noritz is new to the board, he’s a familiar face here at the CP Research Network as one of the founding members of our network steering committee.

As an internist and pediatrician specializing in neurodevelopmental disabilities and Chair of the Council on Children with Disabilities (COCWD), he brings vital medical expertise to the most strategic level of our organization. He is also the Principal Investigator of our clinical CP registry which now hold important medical information on approximately 7,500 patients with CP and accelerates our research.

Passionate about making sure that no child with a disability is overlooked and a longtime advocate for inclusivity and advocacy, we know his perspective and guidance will help us achieve our important mission.

He’s joined by David Browdy, BS, MBA. Mr. Browdy is a highly experienced business leader and the current Vice President and CFO of the Fred Hutch Cancer Center.

The former CFO of Utah Health, Mr. Browdy’s interests and expertise lie in finding that difficult balance between the business models behind healthcare systems and the potential of scientific and medical advances.

His impressive track record of building successful nonprofit research programs will be a real asset to the CP Research Network’s board as our continued quality improvement efforts mean we need to carefully consider the value chain of hospital care.

Also joining the board in April was Michael Pearlmutter. The current Executive Director of  Cerebral Palsy Alliance Research Foundation (CPARF), Mr Pearlmutter has extensive experience leading nonprofit organizations and strategic research funding from his experience at the Partnership for Clean Competition Research Collaborative.

Mr Pearlmutter’s place on the board will be a valuable way to strengthen the growing alliance between CPARF and the CP Research Network following our strategic partnership which we announced in February.

CPARF’s focus on closing critical research gaps combined with our reach as the largest network of hospitals and community members focused on improving health outcomes for those with CP, will allow us to implement larger scale changes more quickly, making a real difference to the lives of those with cerebral palsy and their families.

A very warm welcome to Dr Noritz, Mr Browdy and Mr Pearlmutter. We look forward to seeing how their time and insights will help us drive forward important new initiatives, continue to build our network, and deliver real change.

As well as our board, there are many important ways to get involved with our network and support the vital work we do.

Participate in discussions, take part in current research, access free resources and personalized recommendations through MyCP or support our work with much-needed donations to help us continue improving the lives of those with CP.

Cerebral Palsy Awareness Photo Contest announcement: examples pictures from last year's contestants are shown

Cerebral Palsy Awareness Photo Contest 2023

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 second 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, 2023 – the day officially designated as National CP Awareness Day in the United States.

“We started this initiative last year to fill in gaps in authentic photography for people with CP and to create awareness” said Paul Gross, President and CEO of the CP Research Network. “The community was abuzz with the opportunity to share candid pics of their lives with CP.” 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!

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
Children (under 13 years of age) $100 $50 $25
Teens and young adults (13 to 25 years of age) $100 $50 $25
Adults (25+ years of age) $100 $50 $25
Best Overall $500


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!