Resources for adults with cerebral palsy, such as research and educational presentations, plus an interactive forum you can join today!

 

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

Inside the CP Research Network Annual meeting

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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.

The American Academy for Cerebral Palsy and Develomental Medicine program cover for its 2023 annual meeting

Our Impact Grows: Sharing Our Findings

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The program cover the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine features skyline view of Chicago.

CP Research Network investigators will share our latest findings from our research and quality improvement at the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine in Chicago this fall.

Providers, families and researchers for children with cerebral palsy (CP) will meet in Chicago, Illinois on September 10-13th for the American Academy for Cerebral Palsy and Developmental Medicine’s (AACPDM) annual meeting. This in-person meeting will bring together participants from around the world. The CP Research Network will demonstrate is growing impact on the field of CP care and research by sharing its findings in two mini-symposia, one morning session, four free paper presentations and three scientific posters. All these efforts are aimed at improving outcomes for people with CP through the implementation of evidence-based information and practices. We are thrilled to have the opportunity to share the results of our research, and to provide information about how the CP Research Network can be a catalyst for CP research.

The mini symposia will be two hours in total length including discussion.
Topics include:

  • Common Data Models and Research Data Sources: The practical realities of leveraging rich data sets to accelerate discovery – A multi-disciplinary team of presenters will be led by the CP Research Network CEO Paul Gross and include Michael Kruer, MD. They will discuss the sources of data available to researchers, the mechanism to access them and the practical realities of comparing and linking the data to generate new knowledge. The symposium will include speakers with real-world experience leveraging and linking these types of disparate but related data sources. It is appropriate for researchers focused on clinical and translational research.
  • Understanding the rationale behind practice variation in selective dorsal rhizotomy (SDR) moderated by Paul Gross, includes presenters from the disciplines that participate in SDR decision making including several CP Research Network investigators including Bhooma Aravamuthan, MD, DPhil, Jeffrey Leonard, MD, Tom Novacheck, MD, Joyce Oleszek, MD, and Brandon Rocque, MD, MS. The panel will discuss varied approaches to surgical decision making for SDR including overviews of national and international practice variation. They will discuss criteria involved in surgical spasticity decision making for SDR across several large tertiary care centers.

The morning seminar presentation is:

  • Accessing the CP Research Network Registries  for Community Research and Secondary Analyses featuring speakers Kristie Bjornson, PT, PhD, Mary Gannotti, PT, PhD, Paul Gross and Brandon Rocque, MD, MS.  These speakers will discuss how researchers can access the data generated by the CP Research Network registries to perform secondary analyses that generate new knowledge about CP from existing data collection.  The speakers will cover the process for applying to access data and the types and quantity of data available in both the clinical and community registries.

Free papers and scientific posters feature a single investigator presenting findings based on research generated from our network. Free papers are eight minute oral presentations given to attendees and posters are displayed a specific times during the conference in which investigators are available to explain their research findings one on one with interested attendees.  In this format, topics and investigators include:

Free papers:

Scientific Posters:

These symposia, morning seminars, scientific posters and free papers all focus on improving care and advance research on the international stage. The broad reach the network’s work is clearly visible at this annual meeting and will attract new clinician researchers into our circle, with potential to widen our eventually impact.

A woman in a maroon graduation cap and gown and a gold sash sits in her wheelchair.

Winners! Cerebral Palsy Awareness Day 2023

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Today, March 25, is the federally recognized Cerebral Palsy (CP) Awareness Day! We are excited to announce the winners for our inaugural CP Awareness Month photo contest. In February, we began accepting submissions in three categories that we thought were important to represent our community: kids, teen & young adults, and adults over 25. Each of the following submissions were selected by being the top three photos in these categories in votes out of 13,383 counted:

First Prize Winners ($100 each) [Adults | Kids | Teens and Young Adults]

A woman with black hair and red and white striped sweater looks surprised as her boyfriend proposes

He Put A Ring On It!:
We got engaged after dating for three and a half years! I was completely taken by surprise.

Neighbourhood Stroll With Daddy:
Lyndon has moderate spastic quadriplegic CP and epilepsy. He uses a walking belt for safety measures as he can have a drop seizure at any time. He loves getting outside and walking!

A young adult sits in her wheelchair wearing a purple wig with a bright pink feather boa next to Halloween decorations.

Halloween Fun:
One day each year it’s fun to dress up in a fun bright outfit and sing out loud!

Second Prize Winners ($50 each) [Adults | Kids | Teens and Young Adults]

A woman in a bright orange shirt with glasses and long blond e hair smiles in her power wheelchair

Playing Power Soccer:
Proud to be a part of the Overdrive Power Soccer team!
Photo credit: Mary Free Bed Rehabilitation Hospital

A child with her hair drawn back in high pony tail paints green on a CP support ribbon.

Cerebral Palsy Support Painting:
Ava is a happy, driven 3 year old with spastic hemiplegia CP. In this photo she is sporting her favorite “Cerebral Palsy Warriors are Magical” t-shirt while painting a CP support ribbon.

A teen girl rides an all terrain track chair across a rocky trail.

Adventure Is Out There!!:
Brianna is always up for an adventure, especially when it involves an Action Trackchair!!

Third Prize Winners ($25 each) [Adults | Kids | Teens and Young Adults]

A woman with a light blue and red helmet gets strapped into an adaptive sled by guides.

Adaptive Snow Skiing
Loving the feel of the cold air as she goes skiing down the slope, feeling free!

A young boy smiles in a navy blue top with red and white stripes while sitting in front of an electric keyboard.

Gabriel Loves Making Music On His Keyboard:
When Gabriel is in his stander, he loves playing music on his keyboard.

A teen is strapped into an adaptive ski by instructors with a German Shepherd in the foreground.

This Is My Cerebral Palsy:
My name is Kaelyn and I have been shredding down the mountain for the past four years. Adapted Recreation has been a game changer for me (and my family) and of course, Shadow my service dog.

Congratulations to each of these photographers and subjects for their selection and their prizes of $100 for 1st place, $50 for 2nd place and $25 for 3rd place.

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 winner is:

A young woman in a maroon cap and gown with gold sash smiles while sitting in her wheelchair.

Graduation
I mastered it!

Congratulations to Karyn for the photo in her graduation cap and gown and for the $500 prize!

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!

Webinar: Making a Difference with MyCP

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A headshot of a smiling man with grey eyes and short dark hair. Paul Gross is the President & CEO of the CP Research Network.

CP Research Network CEO Paul Gross will explain how both community members and clinician researchers can get the most out of MyCP.

This month’s webinar turns the table on our usual “clinician scientist’s report on their study results” and focuses instead on how you can contribute to science as a member of the community or as a clinician.  Cerebral Palsy Research Network Chief Executive Officer, Paul Gross, will demonstrate the range of capabilities of and benefits from engaging in research through MyCP.  MyCP is a personalized, secure web platform for collaboration and contribution to research about the lived experience of having CP or caring for someone with CP.  The webinar is scheduled for Wednesday, March 29, at 8 pm ET via Zoom.

The primary way that MyCP allows community members to participate in research is through surveys hosted in a well-established academic research survey platform called REDCap.  Before community members can access surveys, we go through an informed consent process.  We will discuss the key areas of consent and the privacy and security of data to enable your participation in research.  Members of the research community will benefit from learning about how consumers participate in our research environment and how community members are informed of available studies.

MyCP includes personalized web resources, access to our award winning toolkit and other resources, and a private discussion forum.  The discussion forum provides a private and optionally anonymous platform for community members to interact with the physicians in our network to discuss research priorities, evidence-based treatments and to share important lived experiences.  The webinar will review how community members and clinicians can connect to improve outcomes for people with CP.

Please register and join us for this presentation and discussion so you can learn how MyCP can help you contribute to the conversation and the action to optimize the lifelong health and wellbeing of people with CP.  The webinar will also be recorded and posted to our website and YouTube.

A young man with black hair and a beard stands in his walker in a red short sleeve shirt smiling broadly with waves behind him.

CP Stories: Jay Pande, Budding Scientist, Plans to Give Back to the CP Community

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Soon after Jay Pande was diagnosed with cerebral palsy at nine months, his parents quickly started familiarizing themselves with current CP research. His mom, Poonam, and his dad, Girish, are both pharmaceutical scientists, so their attitude toward treatment reflected their clinical backgrounds. “We have always approached the treatment of my CP with a focus on data and evidence, both from my own experience and that of our network of medical providers and other families,” said Jay of his childhood. After trying various interventions, Jay and his family eventually settled on a steady, diversified diet of standard and aquatic physical therapy, as well as an “extensive home program of stretching and exercise.” This approach has been particularly effective in maintaining Jay’s flexibility and walking ability, but Jay and his parents are faithful only to what works: “We continually adjust our treatment strategy as we observe functional limitations or opportunities for improvement,” said Jay.

As Jay made his way through the school system of his home state, North Carolina, he found it increasingly difficult to keep up with the demands typically faced by students. He’d always been academically inclined, especially favoring math and science, but general fatigue, motor delays, and visual processing issues meant that he had additional needs that weren’t being met. Jay pointed to the Closing the Gap Conference, which he and his parents attended in Minnesota in 2010, as a real turning point. “I was able to see examples of assistive technology, and I had a much better idea about what technology I needed to be successful,” said Jay. Just like he and his parents arrived at his therapy regimen, it was a matter of figuring out what Jay needed to thrive, and then fine-tuning from there. The process was far from easy—like so much else in advocacy work, it was nonstop trial and error—but the family’s efforts have allowed Jay to excel.

A young man with black hair and a beard stands in his walker in a red short sleeve shirt smiling broadly with waves behind him.

Jay Pande, graduate of Duke, is a 2nd year PhD student in computer science at North Carolina State University. He hopes to use technology to help people with disabilities be successful in academic settings.

Jay’s hard work earned him a spot in Duke University’s class of 2020, where his course of study, computer science, was directly influenced by his experiences with CP. “I chose to major in computer science because I was very cognizant of how technology has enabled my academic and professional success,” he said. As a current 2nd-year PhD student in computer science at North Carolina State University, Jay plans to build upon this interest by creating new technology to empower disabled people to be successful in academic settings. When I asked him about his research, he responded, “I’m interested in how natural language processing, and especially automatic speech recognition, can support universal design and level the playing field for people who struggle with writing, typing, or interacting with a computer during learning activities.” It’s hard not to see this research interest as resulting directly from the assistive technologies that aided his early academic pursuits.

A young man with black hair smiles broadly sitting in his wheelchair with a navy blazer, light shirt, red tie and khaki pants

Jay Pande prepares to go to the Disability:IN conference in Chicago in 2019.

Despite a demanding course schedule—computer science is notoriously work-intensive—Jay also managed to also remain active in local disability advocacy communities during his undergraduate years. By the time he was a sophomore at Duke, he was president of the Duke Disability Alliance (DDA), a student organization promoting accessibility and inclusion of people with disabilities in the Duke community. One of his duties included organizing DDA’s annual Disability Pride Week. He also played a key early role in advocating for an on-campus space for students with disabilities. “I feel very proud that I, along with the other students I worked with, made the Duke community a more welcoming place for people with disabilities,” he said. Likewise, Jay is on the advisory committee of the AAAS-sponsored Working Group for Students and Professionals with Disabilities. About his involvement with the organization, Jay said that he’s “excited by the insight the working group continues to provide into how to increase the participation of people with disabilities in Science, Technology, Engineering and Mathematics (STEM).”

Jay has also remained active in the larger CP community, particularly CP Research Network. His family first became involved with the organization after his mom attended a 2017 CP Research Network meeting in Chicago, and since then, Jay has made it a point to attend the CP Research Network webinars and participate in studies. In Spring 2021, he also participated in network’s MENTOR program. “I really appreciate how these experiences have helped me feel connected to other people with CP and have shown me that I am not alone in striving to be as healthy as possible while living a fulfilling life,” said Jay.

When we asked Jay why he values collaborating with the CP Research Network, he talked about the uncertainty he felt regarding how CP would affect his life as he aged. For a long time, CP was thought of as a condition restricted to childhood and adolescence, and the CP Research Network has worked to change that perception. “CPRN is doing great work to improve our collective understanding of CP,” said Jay. “I am hopeful that, in the future, I’ll have less uncertainty about the best ways for me to stay in good health.”

And so it is fitting that, in some sense, Jay’s PhD research will focus on a similar topic: how to improve the lives of people with disabilities. He expects to remain in academia after his PhD and continue researching technological innovations which ensure equitable access to education for people with disabilities. He still has a lot of work to do to make these formative plans a reality, but with young researchers and advocates like Jay, the CP community is in excellent hands.

Drs Bailes, Gannotti and Noritz headshots. Bailes and Gannotti each with short brown hair and Noritz in a suit with glasses.

Improving Adult Care: A Glimpse into Progress

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The Cerebral Palsy Research Network will present our Adult Care Initiative at the next meeting of the American Academy for Cerebral Palsy and Developmental Medicine’s (AACPDM) Adults and Aging Special Interest Group (SIG) on Tuesday, February 28 from 4 pm ET until 5:30 pm. The presentation is open to the public and we encourage adults or clinicians who treat adults to join us.

The AACPDM is a professional society that gathers and educates physicians and therapists who treat people with cerebral palsy (CP). The SIG is open to the public and encourages members of the community to join in the presentations and discussions to contribute their lived experience. CP Research Network CEO Paul Gross is part of the organizing committee of the Adults and Aging SIG and will lead the meeting next Tuesday. Presenters include:

• Amy Bailes, PT, PhD, Clinician Researcher at Cincinnati Children’s Hospital
• Mary Gannotti PT, PhD, Professor of Physical Therapy at University of Hartford
• Garey Nortiz, MD, Medical Director of Complex Care at Nationwide Children’s

Drs Bailes, Gannotti, and Noritz have all been leaders in the network since it was founded in 2015. The presentation will be followed by a Q&A and discussion about adult care and quality improvement.

Community members interested in joining the discussion must register in advance with AACPDM. Additional questions can be answered by emailing AdultAgingSIG@aacpdm.org. Unlike the MyCP Webinar Series, this presentation will not be recorded.

Dr. Aravamuthan with long black hair over a white lab coat & Dr. Barber with shoulder length brown hair in a black suit jacket

CP Sensory Study Findings Webinar

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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)?
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)?
The Cerebral Palsy Research Network will continue it MyCP Webinar Series next Tuesday, February 21, at 8 pm ET with a presentation of the findings of its Sensory Study that was conducted with our Community Registry last summer. Principal investigators, Bhooma Aravamuthan, MD, DPhil and Danielle Barber, MD, PhD, will co-present the results of their study. The study included input from adults with CP caregivers for children with CP.

Dr. Aravamuthan described the goals of the study in a short YouTube video. She explained that most treatments for CP focus gross motor concerns but sensory issues may play a significant role. Their findings suggest that abnormally decreased sensitivity to sensory input – especially the sense of touch — decreases with age especially in people with more limited mobility. Join us to learn how these findings relate to pain and how these findings may be foundational for the treatment of pain.

Dr. Aravamuthan is pediatric movement disorders neurologist at Washington University in St. Louis and a leader in dystonia research in the CP Research Network. Her Co-PI in this study, Dr. Barber, is an attending physician in the Division of Neurology at Children’s Hospital of Philadelphia. Both clinician researchers will be available for questions and answers after the presentation of their findings.

The MyCP Webinar Series is a monthly presentation of research findings for studies conducted by the CP Research Network. The series is free and open to all members of the CP community. The webinars use the Zoom meeting platform to allow participants to interact in real time with the researchers at the conclusion of the presentations. You can sign up for this webinar here. You can choose to signup for the whole series and received automated email invitations to each month’s webinar. You can sign up for our YouTube channel to get notifications when recordings are posted.

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

Cerebral Palsy Awareness Photo Contest 2023

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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!
Thanks to Drew Beamer and Unsplash for this shot of a crystal ball in an extended hand with a view of the horizon

Stellar Year – Even Brighter Future

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Dr. Ed Hurvitz, holds a mic while speaking to CPRN investigators seated classroom style at our Chicago meeting

Forty clinician investigators, community members and advocates gathered in Chicago in May 2022 to advance the research of the network.

The year 2022 was stellar for the Cerebral Palsy Research Network on several fronts — the creation of numerous new studies and funding to support existing studies, such as one focused on adult wellbeing and pain. We have had invaluable engagement with the community through our 11 webinars and our in-person research meeting in May. Additionally, we have implemented measurable standardization of care at 12 of our hospital centers through our quality improvement (QI) program. Finally, our partnership with the National Center for Health, Physical Activity and Disability has brought wellness programming to the CP community, and our new partnership with the University of Pittsburgh has begun providing us with data coordinating services.

The change in our business model that we set in 2021 has blossomed into a critical funding source that will sustain our future research enterprise and strengthen our team and infrastructure. Our research sites are supporting the network not only by volunteering their time to contribute to the CP registry and our quality improvement processes, but also by paying a participation fee to support the personnel and other resources necessary to run a high quality research network. These fees have allowed us to hire Dr. Kristie Bjornson as our scientific director and Dr. Amy Bailes to lead our QI efforts. In addition, we have been able to retain a consulting firm that specializes in data collection embedded in the electronic medical record which is a unique aspect to our registry and care improvement model.

A colored bar graph shows sites in the CP Research Network and the number of patients they have enrolled in the CP registry.

Our CP Research Network’s clinical registry has grown enrollments by more than 50% in the past year.

Our research efforts are already seeing the benefits of these investments where our May in-person investigator meeting facilitated the creation of six new research studies for the network to advance in parallel with our nine existing studies. Our existing studies have generated six new manuscripts three of which were published in 2022 and more are coming for 2023. Registries grew to 7,500 patients in our clinical registry (up 50% from the prior year) and 2,058 in our Community Registry (up 41%). These registries are now amongst the largest CP registries in the world. Our genetics study is entering its fifth year and on track to enroll its target of 500 patient parent trios and will reveal many previously unknown factors in the cause of CP. That knowledge will in turn let us begin to personalize treatment in the future.

Our quality improvement efforts are aimed at advancing the quality of care for CP now. We have four active efforts that are showing sustained improvement at multiple centers for the assessment of pain in adults, the consistent diagnosis of dystonia in CP and the surveillance of hips, the top cause of pain in individuals with CP. We have increased the assessment of pain in adults from a baseline of 24% to more than 90% of the visits. Similarly, we have increased the consistency of dystonia diagnosis from a baseline of 42% to just shy of 60%. For hip surveillance, we have examined the consistency of hip surveillance at CPRN centers and we are now using our registry to help identify the patients that need frequent hip surveillance. These care efforts are being spread to additional centers and being written up as manuscripts for publication enabling the CP Research Network to influence the treatment of CP worldwide.

Our wellness programs are focused on keeping people with CP physically active because evidence shows us the importance of exercise for health of people with disabilities. The MENTOR program to which we educate and recruit adults in the CP community has been very positively received by the people who have participated.


Many times over the past few weeks, I have recognized the timeliness of MENTOR for me, given my life stage, CP journey, and the added impact posed by my other health conditions. The MENTOR program helps me see how to manage all of that by building/reinforcing skills around what I can control (e.g., mindset, level of activity, and nutrition). At the same time, the one-on-one opportunities to meet with staff have helped me refine my approach.”
Marji – MENTOR graduate

While we are excited by what we have accomplished in 2022, we are anticipating an even more impactful 2023. We have a big announcement planned for the coming weeks which will further expand and accelerate our research and education efforts. We are already on track to submit six to eight new grants and publish several more manuscripts. We hope to complete recruitment for our adult study of wellbeing and pain while continuing to follow adult these participants over the long term to increase knowledge about aging with CP. We are planning to release three new toolkits to strengthen our educational offerings. And we hope improve wellbeing in the community with more fitness offerings.

Stay well, stay tuned and thanks for all of your support and engagement in our work!

A blog header show Liz Boyer with blonde hair and blue eyes smiling broadly.

Consequences of Falls Study Results: MyCP Webinar

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On Wednesday, December 7 at 8 pm ET, Liz Boyer, PhD, will present the preliminary findings of her study entitled the “Consequences of Falls in Individuals with Cerebral Palsy.” This presentation is based on data that was gathered in part in our MyCP Community Registry during the months of July and August 2022. This study seeks to close a knowledge gap to better estimate how the burden of falls differs over a lifespan and between gross motor ability in individuals diagnosed with CP.

Dr. Boyer is a Clinical Scientist at Gillette Children’s Hospital in the Center for Gait and Motion Analysis and an adjunct assistant professor in the Department of Orthopedic Surgery at the University of Minnesota. She received her PhD in kinesiology with an emphasis in biomechanics and motor control. Dr. Boyer has been with Gillette since 2015 when she started as a post-doc.

The subjects that participated in this study ranged in age from five to 76 years old and were self-reported as level I – III (ambulatory) using the Gross Motor Function Classification System. More research is needed to identify characteristics of individuals who experience the greatest number of injurious falls including psychological and societal consequences even if falls are non-injurious.

People interested in watching the webinar can sign-up on the MyCP Webinar Series page. Dr. Boyer will be available for questions and answers with the attendees following her presentation of results. The webinar will also be recorded and posted on our YouTube channel.