Cerebral Palsy Health

Have you heard of Brain Computer Interface (BCI)? Have you wondered if this technology might help your child or even yourself achieve goals and unlock potential? The future is here! Join Jen for this episode with Dr. Adam Kirton, Professor of Pediatrics and Clinical Neurosciences; Pediatric Neurologist and Co-Founder of Possibility Neurotechnologies, as he explains what BCI is, how it works, who it can be for, how it helps and the current state of research in this field. He also has resources for those who want to try it out at home! Listen and enjoy this episode that goes beyond hype and delivers hope!

Possibility Neurotechnologies

Orthopedic surgery can be a fact of life for those with cerebral palsy. Many children undergo multiple surgeries through their childhood and teenage years, especially those with more complex CP. In this episode I talk with Dr. Hank Chambers and Dr. Verena Schreiber about their recent publication outlining what parents and your child's medical team should do to prepare for orthopaedic surgery, to help ensure a successful surgery, recovery and outcome. Be sure to visit the episode webpage for parent fact sheets and questions you should ask your child's team before your child's next surgery.

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.