A tag to put things on the home page.

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

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

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

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!
The CP Research Network and CPARF logos side by side to indicate our new strategic partnership.

CP Research Network Announces Strategic Partnership with CPARF

CPARF Executive Director Michael Pearlmutter and CP Research Network CEO Paul Gross pose in navy blazers with light blue shirts smiling broadly.

CPARF Executive Director Michael Pearlmutter joined CP Research Network CEO Paul Gross for a photo following a speech Gross gave at Columbia University in November 2022.

The Cerebral Palsy Research Network announced a strategic partnership with the CP Alliance Research Foundation (CPARF) to accelerate research, improve outcomes and expand educational efforts for the CP community. The CP Research Network will collaborate with CPARF to raise funds for CP research and CPARF will support the existing research efforts underway within the network. CPARF will also promote our toolkits and webinar series to members of its community. The partnership is effective immediately.

“We are excited to formalize this strategic partnership with our colleagues at CPARF with whom we have been working closely for several years,” said CP Research Network President and CEO Paul Gross. “This strategic partnership will help the CP Research Network engage more community members in research such as our adult study of wellbeing and pain, and expand the reach of our educational toolkits.”

The partnership will provide the CP Research Network with dedicated funds to support new studies that are aligned with the convergence of our research priorities with CPARF. CPARF scientific advisor, Dr. Yvonne Wu, a pediatric neurologist and epidemiologist from University of California San Francisco, will join the CP Research Network Steering Committee which oversees the network’s research initiatives. The two organizations will include one another in their events and research operations.

Researchers and community members wanting to learn more about the partnership can register to join Paul Gross and CPARF Executive Director Michael Pearlmutter for a webinar on Monday, February 13 at 6 pm ET. The webinar will also be recorded for viewing after the webinar.

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

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!

Drs Lewis and Kruer pictured in a banner announcing a cerebral palsy webinar on genetics

Update on the Genetics of Cerebral Palsy

Dr. Sara Lewis, with short, asymmetric auburn hair and blue eyes wearing a black tank top.

Dr. Sara Lewis, a post doctoral research fellow in Dr. Kruer’s genetics lab at the University of Arizona, will present an update on Dr. Kruer’s CP genetics study.

The Cerebral Palsy Research Network will kick off its 2023 MyCP Webinar Series next Wednesday, January 11, at 8 pm ET with an update on its study about the genetic causes of cerebral palsy. Dr. Sara Lewis, a Postdoctoral Research Associate at Phoenix Children’s Hospital is working with Dr. Michael Kruer, to identify genetic causes of cerebral palsy and will present the preliminary findings from their research. She and Dr. Kruer, a pediatric neurologist specializing in movement disorders, will be available for questions and answers immediately following the presentation.
Dr. Lewis’ webinar, “Cerebral palsy genetics: opportunities for both research and clinic” will address three main questions:
  1. How are CP genetics studied and what are the key findings?
  2. What can genetics tell us about the changes in the brain from CP?
  3. What is the benefit of identifying genetic causes for a person with CP?

Dr. Lewis received her PhD in Neuroscience in 2015 with an emphasis in genetic neurodevelopmental disorders. Her work integrates human genetics with the fly model to study how genes leading to movement disorders change the brain. Fly models, and other animal models, allow researchers to conduct “pre-clinical” research, i.e., research that is has the potential to translate to humans. Her work also addresses the challenges of implementing genetic findings into the clinical environment. She is funded by the Cerebral Palsy Alliance Research Foundation (CPARF).

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 sign up for the whole series and receive automated email invitations to each month’s webinar.

Cerebral Palsy Research Network CEO Paul Gross smiling.

CEO Paul Gross Speaks at CP ADAPT Summit

CEO Paul Gross wearing a dark blue overshirt with a grey scarf gesticulates while speaking at CP ADAPT

CP Research Network CEO Paul Gross speaking to the 40 clinicians and researchers at the CP ADAPT Summit hosted at the Elsass Foundation in Copenhagen about his experiences building research networks.

The Cerebral Palsy Research Network CEO, Paul Gross, spoke this week at an international summit focused on planning an adaptive trials network for cerebral palsy (CP). Adaptive trials are studies that use unique statistical methodologies to conduct clinical trials that can dynamically change as information is learned from the ongoing trial. Adaptive designs have the potential to test multiple interventions at once which can, in turn, increase the speed of drug or device trials. CP ADAPT is a new international research network in the early planning phase. Mr. Gross has co-founded four research networks over the past 16 years and will be speaking about his key learnings from that experience.

“We are excited to hear Paul’s perspective as both a parent of a child with CP and as a co-founder of numerous research networks,” said Iona Novak, PhD, of the CP Alliance Research Institute in Australia. “We have a long-time collaborative relationship and look forward to planning this new network together.”

Hosted and sponsored by the Elsass Foundation in Copenhagen, Denmark, the summit was organized by leaders in the CP research field including the CP Alliance’s Iona Novak, PhD, Université Libre de Bruxelles’ Bernard Dan, MD, Monash University’s Michael Fahey, MD and University of Copenhagen’s Jens Bo Nielsen, PhD (who also heads Research at the Elsass Foundation). Dr. Novak is received a grant from the CP Alliance to plan the adaptive trials network. Mr. Gross is a Co-Investigator on the grant. While participating as a community advocate, the potential to connect the CP Research Network to CP-ADAPT holds significant potential for more rapidly improving treatments in CP.

Dr. Garey Noritz smiles with salt and pepper hair, a blue dress shirt and wire rim glasses.

American Academy of Pediatrics Updates Report on Cerebral Palsy

A preview image of Dr. Garey Noritz leading to blog post ‘CP Stories: Dr. Garey Noritz’

Dr. Garey Noritz, who is the principal investigator for our CP registry, is an active member of the American Academy of Pediatrics and chairs of the AAP’s Council on Children with Disabilities.

The American Academy of Pediatrics partnered with the American Academy for Cerebral Palsy and Developmental Medicine to release an updated version of their clinical report on cerebral palsy entitled, “Providing a Primary Care Medical Home for Children and Youth with Cerebral Palsy.” The report is more comprehensive than the 2011 version, and that’s a good thing. Our understanding and knowledge of CP and its related conditions has grown exponentially since that time. Moreover, the updated report highlights some previously under recognized aspects of CP. This will help the CP community direct attention to the fact that CP isn’t just a childhood musculoskeletal disorder, but also includes other conditions which may need to be managed into adulthood. There is information on topics such as cerebral vision impairment (CVI), pulmonary conditions, hip dysplasia and swallowing issues among others.[1]

This revised version includes:

  1. Early detection of CP
  2. Transition to adulthood and transfer to adult medical care
  3. More information for pediatricians about providing general care for individuals with CP & collaborating with their specialists
  4. A list of family resources listed throughout the document that includes the CP Research Network and The CP Tool Kit.

When summarizing his perspective on the clinical report for cerebral palsy, Dr. Garey Noritz says, “We emphasize child and family strengths, family choice, and collaboration early on. Physicians also act as advocates who can help families navigate their relationships with the medical system, therapy providers, school, community groups and other resources.” -Dr. Garey Noritz, FAAP, FACP, lead author of the report and chairperson of the AAP Council on Children with Disabilities.[2]

The 2022 AAP clinical report is an outstanding resource for clinicians, and we hope that many of them will learn from it and refer to it when caring for their patients with CP. It is a modern and forward-thinking approach to managing the diversity and complexity of cerebral palsy. We have heard from many families and individuals who feel “lost at sea”, trying to access and coordinate their own care, perhaps this will help alleviate some of these circumstances.

References:
1https://publications.aap.org/pediatrics/article/150/6/e2022060055/190094/Providing-a-Primary-Care-Medical-Home-for-Children?autologincheck=redirected?nfToken=00000000-0000-0000-0000-000000000000

2https://www.aap.org/en/news-room/news-releases/aap/2022/major-health-organizations-release-guidance-on-identifying-treating-cerebral-palsy2/

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

Consequences of Falls Study Results: MyCP Webinar

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.

Dr. Bhooma Aravamuthan reclines in a school bus, mask at her chin, she smiles warmly heading off to a CPRN investigator dinner in Chicago.

CP Stories: Pediatric Neurologist Bhooma Aravamuthan, MD, DPhil

Caring for people with CP is a team sport.
Dr. Bhooma –

Dr. Bhooma Aravamuthan says she fell in love with treating children with cerebral palsy (CP) as an undergrad.

Bhooma Aravamuthan, M.D., DPhil. A smiling woman with long dark hair wearing black rimmed glasses and a white lab coat.

Bhooma Aravamuthan, M.D., DPhil leads both the dystonia research efforts as well as the dystonia care improvements initiatives across the CP Research Network

Previously, she had been drawn to adult neurology. Her uncle had been diagnosed with Parkinson’s disease, and Aravamuthan, now Assistant Professor in the Division of Pediatric Neurology at Washington University in St. Louis, had been keen to pursue that field of medicine. But working with younger patients gave her new insight.

“My DPhil (PhD) was on studying deep brain stimulation targets for Parkinson’s disease in people and in rats,” she says. “When I started med school, I was convinced I would be an adult movement disorders physician conducting Parkinson’s disease research. Then I just fell in love with working with kids.”

The more she worked with children with CP, the more Aravamuthan saw a need for committed clinicians dedicated to enhancing the field of research.

“I felt I could best contribute there,” she says. “CP families are so savvy: they have so much to teach everyone they interact with. Yet, we paid them very little attention from a research perspective and had a limited amount to clinically offer them. I felt that, given my background, this was an area where I could make a difference.”

Ask Aravamuthan what she loves most about her job and she’ll reel off a long list. “I love the kids, I love the parents, I love my colleagues,” she says. “Caring for people with CP is a team sport – every day I feel like I’m part of a big team of people trying to achieve a shared goal.”

As a physician-scientist, the dynamic doctor spends much of her time in the lab advancing research into dystonia, a disorder that causes involuntary muscle contractions, abnormal postures, and involuntary muscle contractions and is prevalent in patients with CP.

“My lab uses machine learning techniques and targeted neural circuit manipulation in mice to understand what causes dystonia after neonatal brain injury,” she explains. “We try to develop techniques to optimize dystonia diagnosis in people with CP and apply these techniques to mouse models of disease.

“I love forming longitudinal relationships with kids and families and watching these kids grow and gain skills over time. I love providing families diagnostic clarity and letting them know about what treatments we have and how much we still have left to do.”

Her warmth for her patients was only enhanced when she became a mother herself. As well as leading the way in CP research, Aravamuthan is raising three young children – including twins!

“I think becoming a mother has helped me better relate to my families and given me a better understanding of how their specific goals and hopes for their child should drive my medical care and my research,” she says.

“Before I had kids, I asked my clinical mentor during Pediatrics training whether being a doctor made it easier to be a parent. She told me: “No, but being a parent made me a better doctor”. I think that’s true for me as well.

“My twins were born at 33 weeks and spent just over six weeks in the NICU. After that NICU experience, I spent a long time trying to reclaim what my perception of a “normal” motherhood was. But that doesn’t exist. I stopped trying to view my patients and families through that lens. Instead of helping them achieve what I assumed they wanted to achieve, I’d ask them about their goals and priorities.”

One such priority is the need for families to feel supported and heard as they transition away from childhood neurological care into adulthood.

“In medical school, you go on your pediatrics rotations and you see children with all kinds of chronic illness and then do your adult rotations and wonder, what happens to all those kids I saw last week when they grow up?” she says. “For CP, finding adult-trained providers willing to care for people with CP is tough. Because the lack of exposure to childhood-onset chronic illness is rampant even at the very beginning stages of clinical training, there is a lot of reticence to take on a population of people you don’t know much about. This is an issue that really needs to be fixed during training – there’s a huge pipeline problem.”

Dr. Bhooma, with long dark hair and glasses, leans into a table of her colleagues eating lunch at the 2019 CPRN investigators' meeting

Dr. Bhooma enjoys lunch with Drs Stevenson, Noritz, Glader, Nichols, Kruer and Rocque (counter clockwise respectively from her right) at the University of Michigan during our 2019 investigators meeting.

Day to day, Aravamuthan works closely with other key figures in CP clinical care with the shared desire to improve evidence-based medications, therapies, and surgical techniques through rigorous randomized-controlled trials and input from the CP community. She cites the CP Research Network as a key component of this goal as the network brings together a “supportive network of people interesting in improving the lives of people with CP across all disciplines.”

In 2020, she became the vice-chair of the Adults with Intellectual and Developmental Disabilities section of the AAN where she is working to educate adult neurologists about the need for ongoing care for people with CP.

As she continues her critical work, Aravamuthan is optimistic that with advocacy, research, and effort, the culture can be changed. “People realize that increased CP research across the lifespan, in particular in dystonia, is important,” she states. “Time will tell on the follow-through in terms of grant dollars and the clinical prioritization of CP clinics across the lifespan.

“Advocacy is critical for what we do. A lot of the lack of focus on CP is because people still think it’s a “wastebasket” diagnosis. They don’t see the clinical impact of it, the faces of the people who have it, or the fascinating research questions in CP waiting to be addressed. I had no idea that advocacy would be a part of my job, but it’s such a gift to be able to introduce someone to what an important topic this is.”