Cerebral Palsy Health Jennifer Lyman

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