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.

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.

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.
Winners! Cerebral Palsy Awareness Day 2023
/in Adults, Children and Families, CP Daily Living, Latest/by PaulToday, 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]
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!
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]
Playing Power Soccer:
Proud to be a part of the Overdrive Power Soccer team!
Photo credit: Mary Free Bed Rehabilitation Hospital
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.
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]
Adaptive Snow Skiing
Loving the feel of the cold air as she goes skiing down the slope, feeling free!
Gabriel Loves Making Music On His Keyboard:
When Gabriel is in his stander, he loves playing music on his keyboard.
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:
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
/in Adults, Cerebral Palsy Registry, Children and Families, CPRN Studies, Education, Latest, Research, Wellbeing/by PaulCP 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.
CP Research Network Advances
/in Cerebral Palsy Registry, CPRN Studies, Latest, Research/by PaulRecent Publications
A multicenter initiative to reduce intrathecal baclofen pump surgical site infection: a Cerebral Palsy Research Network quality improvement project” by Robert Bollo, MD, a pediatric neurosurgeon at Primary Children’s Hospital in Salt Lake City, Utah. This publication details the use of quality improvement methodologies to reduce one of the most serious complications of an intrathecal baclofen pump. We are expanding this effort in our network beyond the original four centers included in the publication to four additional centers. Dr. Bollo also delivered our MyCP webinar on ITB pumps last year.
The CP Research Network Curriculum Vitae
We have assembled an all-in-one document to summarize the breadth and depth of the network’s progress which is available for download on our website. This PDF delineates network leadership, participating sites and investigators, advisors, committee members, board members, funded studies, publications and presentations all in one document. We keep it up to date with our new sites and investigators and recognition of our ever growing body of work. Community members can bring it to their CP physicians to ask if they plan to be involved! Clinicians and researchers can use it as evidence for why their institution should be involved in the network activities.
Our Community Registry Goes Back Online
CP Stories: Jay Pande, Budding Scientist, Plans to Give Back to the CP Community
/in Adults, CP Stories, Latest, Research/by Jeremy KleminSoon 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.
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.
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.
Improving Adult Care: A Glimpse into Progress
/in Adults, Latest, Quality Improvement, Research/by PaulThe 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.
CP Sensory Study Findings Webinar
/in Adults, Cerebral Palsy Registry, Children and Families, CPRN Studies, Latest, Research/by PaulDr. 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 2023
/in Adults, Children and Families, CP Daily Living, Latest, News/by PaulLast 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:
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!
CP Research Network Announces Strategic Partnership with CPARF
/in CPRN Studies, Education, Latest, News, Research/by PaulCPARF 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.
“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.
Stellar Year – Even Brighter Future
/in Adults, Cerebral Palsy Registry, Children and Families, CPRN Studies, Latest, Quality Improvement, Research, Wellbeing/by PaulForty 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.
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.
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!
Update on the Genetics of Cerebral Palsy
/in Cerebral Palsy Registry, CPRN Studies, Latest, Research/by PaulDr. 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.
Dr. Lewis’ webinar, “Cerebral palsy genetics: opportunities for both research and clinic” will address three main questions:
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.