Cerebral Palsy Health

On this episode, Jen interviews Ginny Paleg, PT, DScPT to discuss her recent research surrounding Dynamic Movement Intervention. This therapy has gained popularity in recent years and is frequently recommended by therapists, but is the evidence to support its use?  Ginny helps break this down as we explore what does and does not have evidence and why some of these "intensives" are so popular with families.

In this special episode, Jen interviews Belinda Deramore Denver, PhD, OT while at the AACPDM annual meeting in New Orleans. Dr. Denver's work focuses on vision in children with Cerebral Palsy and she is the principal developer of the new Measure of Early Vision Use. Belinda's clinical and research interest lie in addressing the gaps in current assessment and intervention practices for children with visual impairment and she is motivated to share best practice with more children and families, including those with visual impairments.  We encourage you to take the MEVU on the attached link, print it out and discuss with your providers.  Here is a link to take the survey.    

In this special episode, we highlight the upcoming AACPDM 2025 Conference in New Orleans, and we discuss the following with our guest, Dr. Theresa Sukal Moulton and fellow podcasters, Azucena Gardia, Dr. Kilby Mann and Dr. Tyler McDonald 1. General theme and vision behind this year's conference in New Orleans 2. New Orleans is the host city, and we can expect. 3. How the four-day program and the keynote speakers were chosen 4. This year, we are incorporating several new elements, including the Navigator Access Program, Community Council track, Awards, and more!   There is still time to register for the conference, happening from October 15th to 18th! To register, go to: https://www.aacpdm.org/events/2025.

Jen and Nathalie discuss general preventive care, including vaccines for individuals with CP. We cover the what you should expect from your pediatrician or provider, ways to advocate for yourself or your loved one, and things you can do to make visits more comfortable. We also discuss vaccines, including how they work in the body and the controversies surrounding them.

In this episode, guest and CPF Senior VP of Strategic Partnerships and Advocacy, Cynthia Frisina, gives us a behind the scenes look at how Cerebral Palsy Awareness Day and month came to be and what exactly it means!  She helps us understand the importance of advocacy and the exciting possibilities for cerebral palsy advocacy moving forward, with the help of parents, individuals with CP, and community members. She helps us better understand what advocacy for cerebral palsy is all about and how we can all get involved! About Cynthia: Cynthia Frisina is a global expert on disability advocacy, family education and partnerships.  As a successful marketing and nonprofit professional, Cynthia has committed her career to improving the lives of others through education and strategic outreach. Cynthia spent more than 20 years as an award-winning marketing professional for Fortune 100 brands and healthcare companies, before dedicating her focus on nonprofit organizations serving people with cerebral palsy and other disabilities. When Cynthia's youngest daughter was diagnosed with Cerebral Palsy she launched Reaching for the Stars. A Foundation of Hope for Children with Cerebral Palsy in 2004,  and grew it into one of the largest parent-led foundations of its kind – bridging the gap between education, advocacy and parent physician partnerships for families with a presence on three continents. Cynthia led the establishment of National Cerebral Palsy Awareness Day in the United States and has provided Congressional testimony and transformational input regarding the need for federal Cerebral Palsy research over the past decade. Cynthia also served as the Executive Director of one of the leading US Paralympic Sport Clubs, transforming it into a leader in the field of adaptive sports, recreation and training.  Cynthia's leadership resulted in being honored by the United States Olympic Committee as the Rings of Gold Outstanding Sports Programin the US two years in a row and brought humanitarian adaptive sports programs to Africa, South America and the Middle East. As a result of her impact, Cynthia has been awarded numerous national and international awards including being named one of ten "Champions of Change" by the White House Office of the President of the United States in 2016 for championing opportunities for marginalized girls, including girls of color and girls with disabilities.  She is also an adjunct professor at Georgia State University. Cynthia serves on the global advisory board for the Cerebral Palsy International Sports & Recreation Association (CPISRA), and several other advisory boards in the field including the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM).  She holds a BA from University of Illinois and Masters degrees from Northwestern University.

In this episode, guests Dr. Erica Caffrey and Dr. Sydnee Chavis provide their unique expertise and experience in dentistry and oral heathcare for individuals with Cerebral Palsy and other disabilities across the life span. Both are professors of dentistry who have a passion for advocacy, education and access to high quality dental care for those with disabilities. This podcast covers the topics of general oral health, tooth brushing, fluoride, x-rays, pain, dental trauma, braces and accessibility to care and care providers.  Dr. Erica Caffrey joined the pediatric dentistry faculty in the beginning of 2022. Prior to this position, Dr. Caffrey was an attending at Children's National Hospital and a private practitioner in Washington, DC.  She received her Doctorate of Dental Surgery from Columbia University College of Dental Medicine and her certificate in pediatric dentistry from Children's National. Her areas of clinical and research interest include pediatric oral medicine and oral pathology, social determinants of oral health and dental care for medically complex children. Dr. Caffrey is a Diplomate of the American Board of Pediatric Dentistry and currently serves on the board's examination committee.  She is a consultant for the American Academy of Pediatric Dentistry's Council for Clinical Affairs, and has been the lead author on multiple AAPD Policy Statements.  She is a former recipient of the Samuel D. Harris Health Policy & Research Fellowship and the ABPD Pugh Achievement Award.  Dr. Caffrey is excited to be a part of the thriving UMB campus and to foster interdisciplinary care to promote optimal oral health for children in the Baltimore community.   Dr. Sydnee Chavis graduated from Harvard School of Dental Medicine and completed her general practice residency training at the University of Michigan Health System.  She was faculty at University of Michigan before joining the University of Maryland Dental School Faculty in the division of Special Care. Her clinical interests include providing accessible dental care for patients with intellectual and developmental disabilities, as well as medically necessary dental treatment for patients with medical complexities such as organ transplantation and cancer. She is engaged with teaching dental students, residents, and practicing dentists how to provide comprehensive dental care for complex patients, as well as methods of empowering and enabling dentists to provide dental treatments for patients with special needs and medical complexities. She received her Masters in Epidemiology and Clinical Research and is actively engaged in clinical and translational research to improve methods of dental care, access to care, and oral health outcomes for patients with disabilities and medical complexities. Outside of her career as a dentist, she is married with two young sons and a very entitled rescued racing greyhound, and does stand up comedy. (Her comedy comes in handy in her practice where she has a very attentive one person audience!)

Jen and Nathalie discuss the ins and outs of research, including the different phases of research trials, types of research trials and questions to ask your therapists when they recommend a treatment or intervention. 

Today we're talking about fitness and CP...why fitness is important, how we have incorporated fitness into our son's lives, how we have found gyms and personal trainers and what you should be asking your doctors or therapists so you can help your loved one get fit and stay fit from childhood on.

In this episode with sleep expert and developmental pediatrician, Dr. Golda Milo Manson, we discuss the variety of sleep issues that occur for children with Cerebral Palsy and potential solutions for families. Dr. Milo-Manson covers how to prevent sleep issues, behavioral and pharmacologic interventions, and how to know what to use, for whom and when. Dr. Golda Milo-Manson is the Vice-President of Medicine & Academic Affairs at Holland Bloorview Kids Rehabilitation Hospital, a role she has held for 20 years. She is also an Associate Professor in the Department of Paediatrics at the University of Toronto. Dr. Milo-Manson has worked in Paediatric rehabilitation for more than 20 years, largely with children and youth with physical disabilities as well as complex sleep disorders. She has been a member of the American Academy of Cerebral Palsy & Developmental Medicine (AACPDM) for most of her academic career and is currently serving on the Executive Board of Directors. She has served as a local co-host for two AACPDM Annual Meetings held in Toronto.

On this episode of Coffee Talk with Nathalie, we discuss sleep and the complexities of the sleep issues that we have experienced over the years. Nathalie offers insights and advice as both a parent of a young man with CP and a pediatrician.

In this new series within Cerebral Palsy Health, Jen sits down with Nathalie Maitre, MD, PhD to talk about parenting, our shared experiences raising sons with CP and more!

On this episode I am talking with physiatrist Nathan Rosenberg about participation, helping parents (and me) make decisions about treatments and sorting through when treatment is worth it or not.  Nathan Rosenberg, MD, is a Pediatric Rehabilitation Physician (Pediatric Physiatrist) at Nationwide Children's. He is the medical director of the rehabilitation inpatient consultation service. Additionally, he participates in outpatient clinics caring for children with cerebral palsy, brain injury, spinal cord injury and a host of additional conditions that impact how a child functions. He is a member of the neuro-oncology and cerebral palsy comprehensive care clinic teams.

On this episode of Cerebral Palsy Health, Jen talks with neonatologist and researcher Nathalie Maitre about her work with Cerebral Palsy Foundation to create an early detection and intervention network, what this means for babies and their families and how this is being scaled to meet needs in more and more places. Nathalie talks about how babies learn, how CP can interrupt this process and how interventions can help.  She also talks about her motivation and why she is so passionate about helping babies at such a young age.   Nathalie's Bio: Dr. Nathalie Maitre MD, PhD (Emory University and Children's Healthcare of Atlanta, Atlanta, Georgia). Dr. Maitre is a practicing clinician and NIH-funded neuroscientist with a focus on neurodevelopment in high-risk newborns and developmental interventions after neural injury. She is the Director of Early Development & Cerebral Palsy Research at Emory University School of Medicine and Children's Healthcare of Atlanta. She is the co-PI with Rachel Byrne of the CPF-funded US Early Detection and Intervention Network, and the Strategic Officer of the Georgia Alliance for Cerebral Palsy.  Dr. Maitre is a member of the international IMPACT for Cerebral Palsy workgroup and has developed caregiver-based motor learning programs for UNICEF and the World Health Organization. She is also the mother of a teenage son with cerebral palsy Resources and Research: www.cpresource.org https://cpresource.org/apples-tele-study https://cpresource.org/3-under-3 https://georgiaallianceforcerebralpalsy.org  

On this episode, Jen talks with physical therapy professor and researcher, Lisa Kenyon, PT, DPT, PhD about powered mobility for individuals with cerebral palsy. They discuss early powered mobility and the impact on learning and function, powered mobility standing devices and the impacts on participation and the barriers related to insurance coverage. Resources to help with letters of medical necessity are also discussed. Enjoy the show! 

On this episode, Jen talks with Sarah Storck, a Vocational Rehabilitation Counselor and Work Incentives Practioner, and David Stoner, a writer and an individual with Cerebral Palsy who has utilized the services discussed. They talk about the process of working with vocational rehabilitation, support during employment and mechanisms to help ensure that you can keep your benefits even while earning an income.   Sarah is the founder and CEO of Next Step Success, LLC, an organization whose main purpose is to help underserved populations, specifically individuals with disabilities, achieve employment and financial success through a variety of services.  At Next Step Success, LLC, Sarah works one on one with clients as a Vocational Rehabilitation Counselor and Work Incentives Practitioner. Prior to starting Next Step Success, LLC, Sarah worked as an Employment Specialist (job coach) for seven years and a Work Incentives Practitioner for four years through private and non-profit employment services organizations as well as for state vocational rehabilitation agencies. She has extensive experience in providing case management, guidance and counseling, job readiness skills, Social Security benefits planning and financial education.  She currently provides employment and benefits counseling services through the Social Security Administration's Ticket to Work Program and State Vocational Rehabilitation agencies.   She holds a Bachelor of Arts degree in both Criminal Justice and Psychology and a Master of Science degree in Clinical Rehabilitation and Mental Health Counseling. Sarah is a Certified Work Incentives Practitioner through Cornell University and a Certified Rehabilitation Counselor through the Commission on Rehabilitation Counselor Certification (CRCC). Sarah is the current President of the Virginia chapter of the National Rehabilitation Association and is an active member of NABWIS, the National Association for Benefits and Work Incentive Specialists.   David Stoner received his bachelor's degree in Journalism and Digital Communications from the University of South Florida in 2018. His love for media came hand in hand with his love for story-telling and his belief that the best stories come from the world we live in. David was born with cerebral palsy and has used a wheelchair along with other adaptive technology to make sure he remains active and lives life to its fullest. His fiancée, Shelby, who also has CP, is his biggest supporter. Together, they are a very driven team and are looking forward to tying the knot in May of 2022. Hailing from the Tampa Bay Area, David has a strong passion for its beautiful surroundings, beaches, and especially for the many college and professional sports teams. David's writing interests include sports journalism, mainly about Tampa Bay sporting teams, however he has written a number of articles on various topics and remains focused on sharing his experiences in the world as a disabled person. His passion for life is equalled by the love he has for his family.  

In this episode, Jen talks with healthcare architect Noam Platt about Makers Making Change, an organization that is creating affordable assistive technology for individuals with disabilities. They discuss how this program works, types of assistive tech that are being made to order, as well as tech designs that can be downloaded and made at home.  Resources Discussed:  https://www.makersmakingchange.com/ https://tomglobal.org/ https://jenmadeit.com/ Additionally, mentioned in the podcast, they discuss 3D printing and generative design, for those interested in learning more about how this process works, check out the courses offered by https://classroom.weareprintlab.com/.  

In Episode 6, Jen talks with physical therapist and cerebral palsy researcher Theresa Sukal Moulton and Frame Runner manufacturer/vendor David Black of RAD Innovations about the recreational and adaptive sport of Frame Running. A relatively new recreational sport in the US, a Frame Runner is an adaptive running frame that looks similar to a bike without pedals which allows individuals with CP run or walk with minimal to no assistance. It has become popular internationally and is included as a sport in the World Paralympics. David, Theresa and Jen discuss the history of Frame Running, who can participate, how it works, research to support it and how to get involved.  Frame Running/ Race Running Research https://bmjopen.bmj.com/content/10/7/e036469 https://bmcmusculoskeletdisord.biomedcentral.com/articles/10.1186/s12891-020-03202-8 https://core.ac.uk/reader/161924354?utm_source=linkout Frame Running/ Race Running Clubs International: Cerebral Palsy International Sport and Recreation Association https://cpisra.org/ https://www.cpsport.org/sports/racerunning/racerunning-clubs-and-sessions/ US: https://www.racerunningusa.org/frame-running-clubs.html https://www.rad-innovations.com/racerunning.html            

On this episode, I have the honor of talking with Wendy Pierce, MD, a pediatric physiatrist at Colorado Children's Hospital about physiatry, also known as Physical Medicine and Rehabilitation. This fantastic field of medicine can be helpful for individuals with cerebral palsy across with lifespan, but it has a confusing name and sometimes a confusing job description. So we set out to help listeners better understand what a physiatrist does. We discuss the history of physiatry, the conditions they treat, the types of medical interventions they utilize, and what the practice of physiatry looks like for individuals with cerebral palsy.  Dr. Wendy Pierce is board certified in Physical Medicine and Rehabilitation with a pediatric subspecialty.  Her focus is on improving the function of children with chronic illnesses including cerebral palsy.  She earned her medical degree from Northwestern University and completed her residency at Baylor College of Medicine. She started at Children's Hospital Colorado, where she completed a fellowship in pediatric rehabilitation medicine. Dr. Pierce began her career at Rady Children's Hospital San Diego then in April 2014 started at Children's Rehabilitation Clinic in Colorado Springs.  She is faculty at the University of Colorado. She has served on several committees of the American Academy for Cerebral Palsy and Developmental Medicine.  She is a member of the data review team for the clinical gait lab at Children's Hospital and serves on the board of the Commission of Motion Lab Accreditation.             She and her husband Aaron have volunteered for the adaptive ski program at Children's Hospital Colorado, which is how they met.  She serves as bus staff and medical consultant.  Her husband is a sit ski instructor for the program.   Her husband is a mechanical engineer by training and now works for Numotion as an Assistive Technology Professional.  They have 2 happy girls – Penelope age 4 and Abigail age 2 and 1 cat and 6 hens. Resources Discussed:  Where to find a physiatrist: https://members.aapmr.org/AAPMR/AAPMR_FINDER.aspx or  https://www.aacpdm.org/providers/ National Sport Center For the Disabled:  https://nscd.org/    

On this episode I talk with two of the world's leading researchers… Dr. Madison Paton and Dr. Iona Novak on stem cell treatment for cerebral palsy. Stem Cells have been a hot topic in Cerebral Palsy for at least 15 years now, with many parents and researchers hoping that at the least, stem cells will lessen the impact of CP and at most hold the key to a cure. Dr. Paton and Dr. Novak will share their insider knowledge into this subject and help us sort through the hype and so we can hold onto our hope. We discuss the various types of stem cells and how they might benefit those with CP.  We also discuss current research, Jen's experience with her son's stem cell trial, how to learn about other stem cell trials and where to find resources.  We also talk about stem cell tourism and issues to be aware of with these operations.  Professor Iona Novak is the Head of Research for the Cerebral Palsy Alliance Research Institute, located at the Brain Mind Centre, in the University of Sydney (in Australia). Iona is a Fulbright Scholar, and has won the Western Sydney University Chancellor's Award for Alumni of the Year and The University of Sydney Award for Professional Achievement. She co-founded the Cerebral Palsy Alliance Research Institute for the purpose of: prevention, cure and treatment of cerebral palsy. Driven by an internal belief that healthcare truly has the potential to change lives, Iona has pursued projects and roles that will have the greatest possible impact on children and families in today's and tomorrow's world. She is passionate about evidence-based practice; knowledge translation, neuroplasticity; stem cells and neuroregenerative clinical trials. Iona leads a collaborative research team that is currently conducting the world's largest ever, cerebral palsy early intervention trial, exploring whether harnessing neuroplasticity can reduce the severity of disability. Dr Madison Paton is a Research Fellow at the Cerebral Palsy Alliance Research Institute. She received her PhD in 2018 investigating stem cell therapies to protect the developing brain. She has been working in the field of cell therapies and cerebral palsy for more than 7 years and has transitioned from working in the lab, to helping develop clinical trials that drive the research pipeline. Madison's early work focussed on stem cells collected from the placenta and how we can best protect from brain injury occurring during pregnancy or around the time of birth. She now is interested in applying these therapies to treat babies and children with a risk of brain injury or cerebral palsy. Dr Paton is passionate about science communication, engaging with consumers, and sharing the best available evidence on stem cells. Show Resources: Australian Stem Cell Handbook: https://static1.squarespace.com/static/52e9c5c6e4b02a375f0e1f36/t/5cb12ddaec212dcb3f30ffaa/1555115514335/Australian%2BStem%2BCell%2BHandbook%2B2015_APRIL.pdf Parents Guide to Cord Blood: https://parentsguidecordblood.org/en/about Clinical Trails.gov: https://clinicaltrials.gov/ct2/results?cond=Cerebral+Palsy&term=Stem+Cells&cntry=US&state=&city=&dist=&Search=Search Patients Like Me: https://www.patientslikeme.com/conditions/cerebral-palsy State of Evidence Traffic Lights 2019: Systematic review of Interventions for Preventing and Treating Children with Cerebral Palsy https://drive.google.com/file/d/1AUsJaz65HoY3bjPfBryoC6-AF0KVnHBN/view?usp=sharing    

On this episode with Dr. Amy Bailes, we discuss the Gross Motor Functional Classification System (the GMFCS), the Gross Motor Functional Measure (the GMFM), and the corresponding motor curves. The GMFCS is an important classification system that is relatively easy to understand and it helps create a shared language and framework for understanding a person with CP's physical function. This can be very helpful for patients, families and providers of all sorts, especially as it relates to both and acceptance and understanding of the diagnosis  and family-centered shared decision making. Dr. Bailes PT, PhD, PCS is a physical therapist at Cincinnati Children's Hospital and an Assistant Professor in the Department of Rehabilitation Sciences at the University of Cincinnati. Dr. Bailes has more than 30 years of pediatric clinical experience and has been recognized by the APTA as a Pediatric Clinical Specialist since 1993. She began her career at Boston Children's Hospital, moved to Los Angeles and worked at Children's Hospital Los Angeles and has been at Cincinnati Children's for 25 years. Her clinical practice focuses primarily on the care of children with cerebral palsy (CP) and other neurodevelopmental disorders. She also serves on the executive leadership committee of the Cerebral Palsy Research Network. With doctoral training in clinical epidemiology, her area of research focus includes health services and quality improvement with a particular emphasis on physical therapy intervention for individuals with CP. Resources discussed on the episode:  Can Child https://canchild.ca/en/resources/42-gross-motor-function-classification-system-expanded-revised-gmfcs-e-r MyCP https://mycp.org/ Caregiver Knowledge and Preferences for Gross Motor Function Information in Cerebral Palsy https://drive.google.com/file/d/1QjgUESJSYhbpFZIuFflHSu8MM_bjpPBT/view?usp=sharing Stability of the Gross Motor Functional Classification System, Manual Ability Classification System, and Communication Function Classification System https://drive.google.com/file/d/1mX3zC87cbMW5U2-loOevL84xqi2kCM5U/view?usp=sharing Stability of the Gross Motor Function Classification System in Children and Adolescents with Cerebral Palsy: A Retrospective Cohort Registry Study https://drive.google.com/file/d/1BHvTuUfQO2oQ_h0gwrB59NSPH1oAhU3f/view?usp=sharing