Community Forum

Welcome to the 2020 Community Forum from the members of the Community Council. We thank the Academy members and presenters who have so generously volunteered their time to share their knowledge, expertise, and resources with the cerebral palsy community.

Introduction & Resources for 2020 Virtual Community Forum

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Adaptive Sports and Recreation Panel

Speakers: Clayton Frech; Cathryn Gray; Cynthia Frisina; Cindy Housner; Patrick Lawrence; Quinn Whatley; Bower Lyman; and Jen Lyman

Moderators Aura Shoval, MD and Gavin Colquitt, EdD, CAPE, CSCS interview Clayton Frech, executive director of Angel City Sports; Athlete Cathryn Gray and her mother Cynthia Frisina; parent Jennifer Lyman and her Recreational Athlete Bower Lyman; Adaptive surfer and Athlete Quinn Waitley; Cindy Housner, executive director of Great Lakes Adaptive Sports Association; and Patrick Lawrence, Senior Programs Manager for the Challenged Athletes Foundation. They discuss opportunities, challenges and value of participating in adaptive sports and recreation.

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Robotics and Advanced Rehabilitation Technology: Virtual Reality, Robotic Walkers and Early Powered Mobility

Speakers: Deborah J. Gaebler-Spira, MD; Elaine Biddess, PhD, Peng; Anna M. McCormick, MD, FRCPC; and Cole Galloway, PT, PhD, FAPTA

Researchers Deborah Gaebler-Spira, MD, Elaine Biddess, PhD, PEng, Anna McCormick, MD, FRCPC, and Cole Galloway, PT, PhD, FAPTA, discuss the potential of advanced rehabilitation technology including Virtual Reality, Robotic Assisted Gait Training, and Early Powered Mobility.

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Understanding Dystonia: Diagnosis and Treatment

Speaker: Bhooma Aravamuthan, MD, DPhil

Bhooma Aravamuthan, MD, DPhil presents the latest research on the diagnosis and treatment of dystonia in cerebral palsy.

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Metformin: A Potential Future Treatment for Cerebral Palsy?

Speakers: Darcy L. Fehlings, MD, MSc, FRCP(C) and Donald Mabbot, PhD

Darcy L. Fehlings, MD, MSc, FRCP(C) and Donald Mabbot, PhD discuss their current research trial using the drug Metformin to potentially induce brain repair for children with cerebral palsy.

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Complex Care: A Family Journey - Part I

Speakers: The Shrader Family and Charmaine Wright, MD
Moderator: Lynne Fogel

In part 1 of Complex Care: A Family Journey, the Shrader Family (Carol, Benjamin, Mason, Claire, Cate, and dad, Wade, pediatric orthopedic surgeon and director of the A.I. DuPont Hospital for Children’s Center for Cerebral Palsy) and Med-peds physician, Charmaine Wright, MD, present on the topic of Complex Care as it relates to cerebral palsy, specifically addressing the issues of bone health, nutrition and transition. This presentation is moderated by Community Council member Lynne Fogel.

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Complex Care: A Family Journey - Part II

Speakers: The Shrader Family and Charmaine Wright, MD
Moderator: Lynne Fogel

In part 2 of Complex Care: A Family Journey, the Shrader Family (Carol, Benjamin, Mason, Claire, Cate, and dad, Wade, pediatric orthopedic surgeon and director of the A.I. DuPont Hospital for Children’s Center for Cerebral Palsy) and Med-peds physician, Charmaine Wright, MD, present on the topic of Complex Care as it relates to cerebral palsy, specifically addressing the issues of Caregiver Wellbeing, Sibling Support, and Education. This presentation is moderated by Community Council member Lynne Fogel.

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Healthcare Advocacy

Speakers: Jason Edinger, DO; Jan Willem Gorter, MD, PhD, FRCP(C); Alexis Nichols; and Brenda Agnew

Drs. Jason Edinger and Jan Willem Gorter and Community Council Members and Advocates, Brenda Agnew and Alexis Nichols, discuss Advocacy across the lifespan as it relates to ensuring healthcare needs are met. Perspectives include advocacy on a personal level with your care team, in the community, with insurance agencies and/or benefits, through transition to adulthood, and at a policy (State/National) level.