Cerebral Palsy is a complex health condition that impacts each individual differently. As a result, finding information about what might help improve function, increase participation, and achieve health and lifestyle goals can be difficult. This podcast is a place for conversations with experts about issues related to cerebral palsy that affect health, fitness, function and participation. We will cover a range of topics including: treatments and therapies, nutrition, neuroplasticity, genetics, exercise and fitness, adaptive sports, accessibility, and new trends.
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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.
Dr. Belinda Deramore Denver, a pediatric occupational therapist and researcher, discusses her vital work addressing the significant gaps in current vision assessment and intervention practices for children with Cerebral Palsy. She introduces her strengths-based assessment tool, the Measure of Early Vision Use (Me View), designed to describe how children actually use their vision in daily life, irrespective of diagnosis. The episode emphasizes the prevalence of visual impairment in CP, the need for increased awareness among therapists and families, and the hope for vision improvement through early intervention, advocating for broader use of the Me View to advance research.
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 N...
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 ...
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 accessibilit...
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 h...
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, spin...
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...
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 purpos...
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 disc...
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 sp...
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 the...
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...
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 ...
In this episode, Mary Gannotti, PhD, PT, discusses fitness, health and function across the lifespan for individuals with cerebral palsy. Mary is a physical therapist and medical anthropologist whose personal life experiences and her professional experiences help shape her research in disability, especially cerebral palsy. She specifically looks at how personal and environmental characteristics impact disability status and treatment effectiveness. We discuss fitness and health recommendations for...
