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!

A woman in a chair lifting weights, a girl swimming in a triathalon, a college graduate seeking work and triples in a swing.

Cerebral Palsy Awareness Photo Contest

Young man with cerebral palsy sits in his red walker, while facing the ocean on the sandy beach.In advance of Cerebral Palsy Awareness Month, which runs each year throughout the month of March, the Cerebral Palsy Research Network has launched a photo contest to highlight the lives and experiences of community members living with CP. The contest invites members of the community to submit up to five photos photos that depict their day-to-day life, adventures, challenges, joys, and journey. The CP Research Network has opened its gallery of submissions and will award $1,000 in cash prizes to five winners on March 25, 2022 – the day officially designated as National CP Awareness Day in the United States.

“We find that the CP community is underrepresented in so many forms of media today,” said Paul Gross, President and CEO of the CP Research Network. “As an example, stock photography agencies have very limited authentic photographs of the lived experience for people with CP.” The CP Awareness Photo Contest seeks to develop a rich set of authentic photos of people with CP that can be used in the CP Research Network’s growing cerebral palsy awareness campaigns for March and beyond!

The CP Awareness Photo Contest is opens today on CPRN.ORG. Contestants must be members of MyCP and may participate as an advocate, clinician, researcher or community member Prizes will be awarded as follows:

Category Prize
Creativity $100
Diversity $100
Participation and inclusion $100
Perseverance $100
Physical activity $100
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!

Happy New Year 2022 from the CP Research Network with a black background and fireworks in the corners

Happy New Year from the CP Research Network

At the Cerebral Palsy Research Network, we have a lot to be thankful for.  You, our great extended cerebral palsy (CP) community, helped us achieve our fundraising goal of $10,000 this past month for our MyCP webinar series in 2022.  With our board of directors’ matching, we raised more than $30,000 for our network! We are excited to bring our MyCP webinar series back in full swing next week beginning with a live interview of the authors of Pure Grit (details to come out tomorrow).  Thank you to all who contributed and helped to spread the word!

2021 in Review

Last year was transformative in numerous ways for the CP Research Network.  We kicked off the year with the announcement of our merger with CP NOW. The combination of their educational and wellness programming with our efforts led to significant accomplishments including:

 

Our Research and Quality Improvement initiatives made significant progress in both seeking to answer key research questions about CP and improving the treatment of people with CP now.  A few highlights include:

What’s new for 2022?

We have a lot of projects that will culminate in 2022! These include multiple publications of our work in leading journals, partnerships to sustain and grow our wellbeing offerings, continued progress on our research and quality initiatives, and the return of our MyCP webinar series to name a few.

There are lots of ways to stay engaged with us.

Please consider one of these:

All the best to you and the entire CP community for 2022!

 

 

 

 

October 6 is World CP Day - Millioins of Reasons to Spread the Word

CP Research Network Featured at AACPDM

The Cerebral Palsy Research Network was invited alongside of the National Institutes of Health (NIH), the Patient Centered Outcomes Research Institute (PCORI), and C-Progress to teach early-stage investigators how to establish a successful research program at their institution during the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM). The nine-hour pre-conference tutorial featured presentations from each of these research and funding organizations to emphasize key steps for an investigator to get funding. The CP Research Network is differentiated from its co-presenters by being an organization that facilitates and conducts research.

In addition to presenting the network’s programs, registries, and tools, CEO Paul Gross held a breakout session for Q&A with interested attendees. “It was an honor to present our mission and vision alongside the largest public funders for research – NIH and PCORI,” said Gross. “The attendees also heard from Dr. Michael Kruer about his experience working with the CP Research Network to gain $3M in funding from NIH for his genetic causes of CP study.”

This pre-conference session fell on October 6 – World CP Day – when the CP Research Network Board of Directors has offered to match donations two-fold! World CP Day creates awareness about CP and much needed research around the globe. We are excited to be part of accelerating that research by educating new investigators to the field.

A three-panel banner of St. Louis Children’s Hospital and headshots of Dr. Toni Pearson and Dr. Bhooma Aravamuthan.

St. Louis Children’s Hospital Joins Our Network

Dr. Ton Pearson, with short brown hair smiling in a white lab coat, leads the Cerebral Palsy Center at St. Louis Children's

Toni Pearson, MD, Medical Director of the Cerebral Palsy Center at St. Louis Children’s Hospital is a pediatric movement disorders neurologist.

Dr. Aravamuthan, a movement disorders neurologist, smiles with dark rimmed glasses and long, brown hair in a white lab coat

Bhooma Aravamuthan, MD, DPhil, is a pediatric movement disorders neurologist at St. Louis Children’s Hospital who specializes in the treatment and research of cerebral palsy.

The Cerebral Palsy Research Network is happy to announce that St. Louis Children’s Hospital and Washington University in St. Louis have joined our network. Toni Pearson, MD, Medical Director of the Cerebral Palsy Center at St. Louis Children’s Hospital and her colleague Bhooma Aravamuthan, MD, DPhil, will lead both institutions in the participation in network research and quality improvement activities. St. Louis Children’s Hospital (SLCH) is a tertiary-care (a hospital that is highly specialized) children’s hospital affiliated with Washington University in St. Louis, and is the largest pediatric referral center in Missouri and the surrounding region.

The SLCH Cerebral Palsy (CP) Center is based in the Division of Pediatric and Developmental Neurology, and treats approximately 800 unique patients annually. The CP center cares for a diverse range of patients with childhood-onset conditions associated with motor impairment, including cerebral palsy as well as varied genetic, metabolic, and neurodegenerative conditions.

The core interdisciplinary CP clinical team is composed of 4 pediatric neurologists with subspecialty training in movement disorders, 2 pediatric physical medicine and rehabilitation physicians, physical therapists, an occupational therapist, a social worker, a nurse practitioner, and a nurse coordinator.

The CP Center works in collaboration with the Neurosurgery Center for Cerebral Palsy Spasticity (directed by Dr. T.S. Park), as well as colleagues in Orthopedic Surgery, the SLCH Pediatric Complex Care Clinic, and the Neonatal Neurology Clinic, to coordinate care for children with CP from infancy through adulthood.

CP Center faculty are engaged in research projects on the pathophysiology and clinical characterization of dystonia following perinatal brain injury, pediatric deep brain stimulation for genetic and acquired dystonia, and the clinical characterization and natural history of rare neurogenetic developmental motor disorders.

Small preview image of Dr. Laura Gilbert linking to blog post

Dystonia Agenda Takes Center Stage at Child Neurology Society Meeting

Laura Gilbert, DO, a pediatric neurologist, with shoulder length brown hair and a dark green shirt, smiles broadly.

Laura Gilbert, DO, has won a Junior Member Award from the Child Neurology Society, for her abstract on a patient-centered dystonia research agenda.

Dr. Laura Gilbert, a pediatric neurologist at St. Louis Children’s Hospital, has been selected to present our Dystonia in Cerebral Palsy patient-centered research agenda at the Child Neurology Society (CNS) meeting in Boston, MA in September 2021.

Her talk, entitled, “Top 10 Areas of Research Need for People with Cerebral Palsy and Dystonia: A Novel Community-driven Agenda,” is based on collaborative work she carried out with the Network to engage the community in a research priority setting process for dystonia in CP in 2020.

“Dr. Gilbert played a significant role in the organization and analysis of our dystonia agenda setting process,” said Bhooma Aravamuthan, MD, DPhil, a pediatric movement disorders specialist from Washington University in St. Louis. “She is a smart and savvy burgeoning clinician researcher. It’s been a gift to see her interest bloom in dystonia in CP.”

The Child Neurology Society gathers neurologists annually to advance research and the treatment of pediatric neurological conditions. The live platform presentation has been selected as one of the top 20 abstracts submitted to the meeting. Further congratulations are in order for Dr. Gilbert who will be recognized as one of four Outstanding Junior Members for her work.

Her talk, and talks by her mentor Dr. Aravamuthan, will increase the focus on CP at this year’s CNS meeting. This increased focus will improve child neurologist awareness of issues faced by people with CP and promote research opportunities in the field.

Small preview image of a spider graph linking to blog post

CPRN’s progress as a Learning Health Network is published!

The Cerebral Palsy Research Network’s progress as a Learning Health Network (LHN) has been published in the Journal for Pediatric Rehabilitation Medicine this past week.

Primary author Amy Bailes, PT, PhD, published a self-assessment from leaders in the Cerebral Palsy Research Network using a tool developed by Cincinnati Children’s Hospital called the Network Maturity Grid (NMG).[1] The NMG is used to detail the maturation of necessary infrastructure and processes to create learning networks (LNs).

Bailes’ publication, the fourth since the CP Research Network’s inception six years ago, provides a glimpse into future directions for the network’s development. It details a standardizing scoring rubric used to assess progress across six domains including:

  • Systems of Leadership
  • Governance and Management
  • Quality Improvement
  • Engagement of Stakeholders
  • Data and Analytics
  • Research

The results were tabulated and graphed to provide insights into progress in each domain and areas for improvement.

The CP Research Network’s leadership team amalgamated this analysis to identify key investments that will improve our network maturity over the next five years. Moving forward, these investments will be centered on leadership development, financial sustainability, quality improvement training, the capture of patient-reported outcomes, and enhancing the quality of data collection.

The purple cover of the Journal of Pediatric Rehabilitation Medicine has its title and graphics of children playing, a person in a wheelchair, walkers and helping hands inside of green, pink and orange circles.

The cover of the Pediatric Rehabilitation Medicine.

The Network will incorporate the NMG tool into annual planning. Investments will be measured over the course of a five-year strategic plan for 2021-2025.

Members of the professional and academic community can access the article online with a Journal subscription. Community members may download the original article (prior to revisions required by the editors) from our website.

A small preview image of the Staying Driven logo linking to blog post ‘CP Research Network Launches New Fitness Program’.

CP Research Network Launches New Fitness Program

We are excited to announce a new wellbeing program in partnership with Staying Driven and Steph “the Hammer” Roach! Beginning Tuesday, June 8th at 7 pm ET, Staying Driven coaches will offer virtual adaptive fitness classes exclusively to registered MyCP community members!

Steph 'The Hammer' Roach, Adaptive Fitness CoachStaying Driven - Virtual Adaptive FitnessStaying Driven is a virtual adaptive fitness program founded by Stephanie “the Hammer” Roach. An adult with CP and a former CrossFit trainer and gym owner, Steph shifted her business during the pandemic to virtual classes for people with disabilities. She and her staff of adaptive fitness trainers offer multiple classes a week for people with disabilities.

The CP Research Network has arranged for MyCP members to be able to attend up to two classes per week, free of charge!

To be eligible, you need to complete these registration requirements:

  1. Be a current member of MyCP (joining is free). Parents of teens under 18 need to be the active member.
  2. Participate in at least one MyCP survey (a list of available surveys can be seen here).
  3. Sign up for a free Zoom account for class registration.
  4. Read and sign the waiver for Staying Driven and the CP Research Network on the sign-up page

Are you ready? Go sign up!

How it works:  MyCP members who follow the steps above will receive an email from the CP Research Network with the link to the Zoom Registration for the fitness class with Staying Driven. Steph, or one of her other coaches, will run the class. The participant uses the link to register for each class.

When? Saturdays at noon ET/9 am PT or Tuesdays at 7 pm ET/4 pm PT

What should you bring? A water bottle, a hand towel and a positive attitude.

What about resistance or weights?  Classes are adapted for people of all ages and abilities. Steph will encourage you to gather items from around your house or apartment to participate. If you have a personal care attendant or a caregiver that wants to be involved, they are welcome to attend to assist.

What if I cannot make these times or I want to work out more often? The MyCP Fitness program only supports these two days and times. Staying Driven has monthly memberships that will allow you access to all of the regular programming if you are interested.

Do I need a note from my doctor? A doctor’s approval is up to your discretion. Think of it as joining a gym — the gym doesn’t require a note from the doctor, but the waiver makes clear that you are responsible for making the appropriate health choices for yourself.

Join us for this new and exciting program made possible through your generous donations to the CP Research Network!

A small preview image of the CP Research Network’s website linking to blog post ‘A Labor of Love: Our New Website’.

A Labor of Love: Our New Website

A screen capture of the CP Research Network’s website as it displays on a mobile device

A screen capture of the CP Research Network’s website as it displays on a mobile device

The Cerebral Palsy Research Network will launch its new website – combining all four of its web properties – this Monday, May 24! Our extended community will benefit from this single rich repository of information, resources, research and collaborative tools. In order to learn how to maximize the benefits of our new site, it will be the subject of our next MyCP Webinar on May 26 at 8 pm ET.

Founders Paul Gross and Michele Shusterman will provide background information on the creation of merged site, talk about the design principles and walk attendees through the new user experience, including plans for future enhancements to MyCP.

In January we announced the merger of CP NOW, including its toolkit, wellbeing resources and CP Daily Living blog, with CPRN and its MyCP community engagement site. Carefully sorting how to organize our four web properties was a key step to bringing together CP NOW and the CP Research Network. The new website, found at https://cprn.org, focuses on the four cornerstones of our mission:

  • Engaging the community in research and sharing their lived experiences;
  • Research and implementation of evidence-based health care for cerebral palsy;
  • Educating community members of all ages with content reviewed by experts in CP care;
  • Wellbeing programs for optimizing life-long health.

During this webinar we will demonstrate how to get the most value out of the network and MyCP, including how you can contribute to improving outcomes for people with CP.

Please join us! You can register here: https://cprn.org/mycp-webinar-series/

A small preview image of a virtual meeting linking to blog post ‘Annual Conference Sparks Innovation and New Research Ideas’.

Annual Conference Sparks Innovation and New Research Ideas

Forty-five clinicians from 28 academic medical centers came together on Zoom last month for the Cerebral Palsy Research Network’s fourth annual investigator conference.

Marc Randolph, cofounder and original CEO of Netflix

The two-day online gathering featured keynote speaker Marc Randolph, the co-founder and first CEO of Netflix, who shared pearls of wisdom on decision-making and growth to our diverse audience of research leaders.

Participants, including clinicians from the National Institutes of Health, discussed a range of network studies, including the relevance of genetics in cerebral palsy diagnosis, and brainstormed potential new areas in dystonia research and building capacity to care for adults with CP. 

The meeting also enabled the CPRN team to define goals for an updated 2021-2025 strategic plan, including expanding leadership systems, ensuring financial sustainability, engaging community members, and strengthening research and quality improvement projects. 

“This year, we were able to make extensive use of breakout rooms for discussions and collaborations among smaller groups of investigators,” says CPRN President and Chief Executive Officer Paul Gross. “We were fortunate to have support from the Weinberg Family Center for Cerebral Palsy, making for smooth logistics.”  

Moving to a virtual format proved to be a successful venture with the format and progress of CPRN’s 2021 conference receiving praise from the attendees.

“It was great,” wrote Dr. Ed Hurvitz, chair of Physical Medicine and Rehabilitation at the University of Michigan. “The best Zoom meeting of the year for content, for career development, and being able to connect a bit with friends old and new.”

Paralympian, advocate, and community advisor Duncan Wyeth, also in attendance, remarked: “I have acquired more knowledge and insight over two half-days about my disability and potential system mechanisms to address that disability than at any other time in my life. This meeting gives me great hope and expectations for the countless individuals who will know an enhanced quality of life because of this learning network.” 

Thank you to everyone who gave their time for this important conference. It has set us on an excellent trajectory for 2021 and beyond. We greatly appreciate the commitment of our dedicated investigator team and all their hard work advancing the care of people with CP.

A small image preview of Dr. Bhooma Aravamuthan linking to blog post ‘CPRN Investigators To Detail Important Findings’

CPRN Investigators To Detail Important Findings

Three researchers from the Cerebral Palsy (CP) Research Network will present scientific findings at this year’s American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) annual meeting.  

Kristen Allison, Ph.D., a speech pathologist and researcher at Northeastern University, will present “Speech and Language Predictors of Participation in Children with CP,” research made possible through the CP Research Network’s community registry hosted at MyCP.org.  

Allison’s research stems from parent surveys sharing the speech and language capability of children with CP and insights about their interactions with peers and common communication breakdowns due to speech and language impairments.    

Pediatric movement disorders neurologist Bhooma Aravamuthan, MD, DPhil, was also able to collate data through MyCP.org. She will present her findings on community attitudes toward a CP diagnosis and how a complete explanation of causes of CP can benefit those with the condition and their families.  

A third presentation, powered by efforts within the network, will be led by Amanda Whitaker, MD, an orthopedic surgeon who has been examining practice variation in hip surveillance at centers in the CP Research Network. Her findings are already shaping quality improvement protocols as part of the network’s drive to become a learning health network.   

AACPDM’s 75th annual meeting with take place on October 6 to 9, 2021, at Quebec City Convention Centre in Quebec, Canada.

The CP Research Network remains committed to enabling clinicians to conduct research that advances the care of people with CP via our community registry and learning health network.  

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