Cerebral Palsy Health

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

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 individuals with cerebral palsy including bone health, prevention, and primary care to prevent declines in function with age. Mary provides evidence based solutions to help those with cerebral palsy age in healthy way.

In addition, Mary discusses current patient driven research initiatives through MYCP (an initiative of CPRN) and arms listeners with her latest chapter in Freeman Miller's (soon to be published) book, Cerebral Palsy: A Complete Guide to Caregiving,  in which she and David Frumberg, MD provide an in depth look at the state of therapy services for adults with cerebral palsy and offer recommendations to optimize health and well being across the life span. 

Resources from this Episode:

Clinical Therapy Services for Adults with Cerebral Palsy: Optimizing Health and Wellbeing Across the Lifespan

https://drive.google.com/file/d/1ATg47zUu0YLxXWNK06x6q_5MtYP_QiXE/view?usp=sharing