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.
Webinar: Adults with Cerebral Palsy and Low Back Pain
/in Adults, Cerebral Palsy Registry, CPRN Studies, Latest, Research/by PaulDr. Stutzbach will explain the goals of her study of low back pain in adults with cerebral palsy.
Chronic low back pain is a common problem in adults with CP. It leads to increasing disability and functional decline. Improving pain management strategies is critical to improving quality of life as people with CP age. However, participants’ perspectives on living with low back pain have not been thoroughly examined. This webinar will cover a new study proposal that will use interviews combined with survey data from the adult study in our Community Registry to explore how pain interferes with daily function as well as how adults with CP experience accessing treatment for low back pain.
This study builds on the CP Research Network’s research partnership program that enables investigators outside of the network to conduct studies-based network based on our prior work and research tools. Dr. Stutzbach has partnered with Mary Gannotti, PT, PhD who the principal investigator for the CP Research Network Adult Wellbeing and Pain studies that are available through our Community Registry. Drs Gannotti and Stutzbach will use the Community Registry to enroll participants that have taken our adult pain survey and identified low back pain as an issue in their lives. This new study has been approved by the Regis University Institutional Review Board where Dr. Stutzbach conducts her research.
Community members interested in this MyCP webinar must register. Dr. Stutzbach will be available for Q&A directly following the presentation. A recording of the presentation and discussion will be posted on our website and our YouTube channel within 24 hours.
Low Back Pain in Adults with CPAccelerating our mission with new board members
/in Latest, News/by PaulThe Cerebral Palsy Research Network is all about bringing together people from across the patient, family, medical and research communities to create connections that lead to shared understanding and improved wellbeing for people with CP. It’s why “network” is in our name.
As a network, people are at the heart of what we do, and that’s especially true when it comes to the strategic guidance and expertise provided by our board.
Over the past few months, we’re delighted to have grown our board to welcome three new members:Garey Noritz, MD., David Browdy, BS, MBA, and Michael Pearlmutter, BS, MBA.
Though Dr. Noritz is new to the board, he’s a familiar face here at the CP Research Network as one of the founding members of our network steering committee.
As an internist and pediatrician specializing in neurodevelopmental disabilities and Chair of the Council on Children with Disabilities (COCWD), he brings vital medical expertise to the most strategic level of our organization. He is also the Principal Investigator of our clinical CP registry which now hold important medical information on approximately 7,500 patients with CP and accelerates our research.
Passionate about making sure that no child with a disability is overlooked and a longtime advocate for inclusivity and advocacy, we know his perspective and guidance will help us achieve our important mission.
He’s joined by David Browdy, BS, MBA. Mr. Browdy is a highly experienced business leader and the current Vice President and CFO of the Fred Hutch Cancer Center.
The former CFO of Utah Health, Mr. Browdy’s interests and expertise lie in finding that difficult balance between the business models behind healthcare systems and the potential of scientific and medical advances.
His impressive track record of building successful nonprofit research programs will be a real asset to the CP Research Network’s board as our continued quality improvement efforts mean we need to carefully consider the value chain of hospital care.
Also joining the board in April was Michael Pearlmutter. The current Executive Director of Cerebral Palsy Alliance Research Foundation (CPARF), Mr Pearlmutter has extensive experience leading nonprofit organizations and strategic research funding from his experience at the Partnership for Clean Competition Research Collaborative.
Mr Pearlmutter’s place on the board will be a valuable way to strengthen the growing alliance between CPARF and the CP Research Network following our strategic partnership which we announced in February.
CPARF’s focus on closing critical research gaps combined with our reach as the largest network of hospitals and community members focused on improving health outcomes for those with CP, will allow us to implement larger scale changes more quickly, making a real difference to the lives of those with cerebral palsy and their families.
A very warm welcome to Dr Noritz, Mr Browdy and Mr Pearlmutter. We look forward to seeing how their time and insights will help us drive forward important new initiatives, continue to build our network, and deliver real change.
As well as our board, there are many important ways to get involved with our network and support the vital work we do.
Participate in discussions, take part in current research, access free resources and personalized recommendations through MyCP or support our work with much-needed donations to help us continue improving the lives of those with CP.
Inside the CP Research Network Annual meeting
/in Adults, Cerebral Palsy Registry, Children and Families, CPRN Studies, Latest, Research/by PaulThe 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.
Accelerator Award: Partnership Strengthens CP Research
/in Cerebral Palsy Registry, CPRN Studies, Latest, Quality Improvement, Research/by Kristie Bjornson“We reviewed all the funding mechanisms available to CP focused investigators and established a process that will really streamline the timeline for decision making and investigator feedback,” said Dr. Bjornson. “This award mechanism is a significant milestone for the CP Research Network because it provides the necessary funding to leverage our CP Registries for large public grant applications to answer key questions developed by the community of persons with CP. It is intended to secure time and resources that might not otherwise be available.”
The Accelerator Awards extend additional benefits to sites and investigators that join the CP Research Network. The network offers professional development opportunities, collaborative research partnerships, participation in quality improvement initiatives, implementation of care pathways and powerful research infrastructure hosted at its Data Coordinating Center at the University of Pittsburgh. Nonmembers can learn how to join the network or partner with existing members from our webinar on this topic.
The CP Research Network began taking applications from its site investigators as of May 1, 2023. Grant applications may be submitted on a rolling basis and may be approved in as little four weeks. This rollout aligns well with our annual investigators’ meeting at Nemours/AI duPont earlier this month, where 50 people, including network site investigators, community members, an NIH program officer, and members of leading advocacy groups, gathered to advance study concepts being developed within the network.
Our Impact Grows: Sharing Our Findings
/in Adults, Cerebral Palsy Registry, Children and Families, CPRN Studies, Education, Latest, Quality Improvement, Research/by Kristie BjornsonCP 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:
The morning seminar presentation is:
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.
Selective Dorsal Rhizotomy in the Real World
/in CPRN Studies, Latest, Research/by PaulDr. Leonard is a pediatric neurosurgeon who leads the network study of selective dorsal rhizotomy (SDR).
“The question of who is the best candidate for SDR was the founding question of the network,” said CP Research Network President, CEO and Co-founder Paul Gross. “Being presented with this surgery as an option to help my son’s gait inspired me to seek real world comparative effectiveness evidence about SDR versus other interventions that were offered us at the same time. Dr. Leonard’s experience and passion for designing a study to address these gaps in knowledge aligns with our established patient-center research agenda (Research CP).”
Later this year, Dr. Leonard and other leading researchers in the CP Research Network are planning to submit a grant application to the National Institutes of Health for a 20-center study to generate answers to this question. He will describe the procedure and the extent of variation in practice across the United States as well as how the study will be designed to generate evidence about the effectiveness of SDR.
Please join us for the webinar and discussion next Wednesday evening. You can register for this webinar or the whole MyCP webinar series to receive notices every monthly webinar on our research. The webinar will also be recorded and posted to our YouTube channel.
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.