Community Forum

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Speakers:

“Fostering Inclusion in All Sports”

Sarah McDonald Albus - Sarah Albus co-founded Open Door Sports (ODS) in 2017 after a sixteen year career as the Research Manager for Worldwide ERC®, the trade association for the Relocation Industry. Sarah is a graduate of The George Washington University (M.A.) and Vanderbilt University (B.S.) where she played soccer, winning two SEC championships, as well as being awarded All-SEC and All-Academic SEC honors during her tenure. Sarah played with the US National B Soccer Team in 1993 and 1994 and still maintains both the career and single season assist record at Vanderbilt dating back to 1994. Sarah is a NSCAA licensed coach and through her time navigating youth sports saw the need for better access to quality after-school sports programming for communities that were not being adequately served - specifically children with special needs.

The mission of Open Door Sports is a personal one for Sarah and her husband Mark who have four teenage daughters, one of whom has cerebral palsy. Hannah had always wanted to participate “on a team” and when opportunities for her participation weren’t readily available, Sarah created ODS to give ALL children, regardless of perceived ability or financial status, the opportunity to play.

“Community Programming for All”

Jacob Corey – Jacob is the Co-Founder of Happy Valley FitLink, an inclusive wellness program, founded in State College Pennsylvania. Happy Valley FitLink provides free virtual group fitness classes to individuals with physical, intellectual, and developmental disabilities such as Cerebral Palsy, Autism, Down Syndrome, and traumatic brain injury. Jacob recognized the need for an inclusive physical activity program during his senior year at Penn State University after speaking with friends with disabilities who expressed an interest in participating in group physical activity classes. Unfortunately, there was limited access to inclusive physical activity opportunities in the local community. As a Kinesiology major, Jacob felt that he had the skill set to build an inclusive fitness program for individuals with disabilities within State College. Since founding Happy Valley FitLink Jacob and his co-founders have formed community partnerships and leveraged Zoom to build a wellness community to benefit the lives of individuals with disabilities across the country. They have provided over 500 fitness classes for free to 100-150 individuals of all ages and abilities across the country for the past 2-2.5 years. Jacob will be speaking to you today about how to achieve success with community programing aimed at increasing inclusive yet local physical activity opportunities. Additionally, Jacob will share information with you about Happy Valley FitLink and how you can join this program to take advantage of their free weekly physical activity classes over Zoom.

“Lived Experiences in Sports and Recreation”

Brooke Larrabee - Brooke is a 53-year-old with spastic diplegic cerebral palsy. She lives life to the fullest and never sidesteps adversity. Growing up as a military brat, she’s learned to adapt to many situations. She's traveled extensively, experienced diverse cultures and has taken a bite of life at every opportunity. Her love for the US Army continues today, after a 30+ year career as a Lead Resource Manager. Brooke received her BA in Liberal Arts, an Executive MBA, and has acquired several certificates in leadership to support her career growth.

Participating in physical activity has been a big part of Brooke’s life; including bike riding, skating, and sledding, adapting each to enhance her success. Participation in adaptive Physical Education in school helped to improve her movement skill and endurance. Some of her favorite adventures have been, jet-skiing, parasailing, snorkeling, and an up-close encounter with dolphins. She’s hiked, white-water rafted, and ridden on roller coasters.

Susan Duff, EdD, MPT, OT/L, CHT – Susan is an Associate Professor at Chapman University and an AACPDM Adaptive Sports & Recreation Committee member.

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This panel includes individuals with lived experience with CP and clinical perspectives. This panel navigates the challenges of bullying and friendships, body image, and career path and passions. The overall goal for the panel is to address these specific challenges and provide inspiration in overcoming these challenges.

Speakers:

Emily Ramirez - Emily Ramirez is 25 years old, lives in Wichita Falls, Texas and was diagnosed with spastic cerebral palsy when she was two years old. She grew up in Abilene, Texas and attended Abilene High School. It was there that she started a campaign to add automatic handicap doors on all doors at her high school. The outpour of support from the community was overwhelming. Not one, but 15 automatic doors were installed at her high school. After high school, Emily attended Hardin-Simmons University before transferring to Midwestern State University, and completing her bachelor’s degree in Psychology. Emily is focused on gaining back her mobility and recovery from recent surgeries. In the near future, Emily plans on pursuing a Master’s Degree in Child Life.

Denise Naude -  Dr. Denise Naude, MD is originally from South Africa. She immigrated to the United States when she was young, and was diagnosed with cerebral palsy when she was 18 months old. She earned her Bachelor’s Degree in Biology at Abilene Christian University where she received valedictorian honors, and earned her medical doctorate from Texas Tech University School of medicine. She is currently a family medicine resident at TTUHSC, Amarillo. She focuses her practice on pediatric and adult CP, specifically serving underserved populations locally and globally. She attributes overcoming her CP through invaluable support systems and self-advocacy.

Dr. Heakyung Kim - Dr. Heakyung Kim is a pediatric physiatrist at UTSW AA. She has been working with people with CP focusing on sexuality. She has presented sexuality and life span care at AACPDM for last two years.

Beverley Tann BSN, RN, CRRN - Beverly got her BSN at the Henrietta Szold Hadassah – Hebrew University School of Nursing in Jerusalem, Israel in 1987. She has worked as a nurse at the Shirley Ryan Abilitylab (formerly the Rehabilitation Institute of Chicago) for the last thirty years-initially on the inpatient pediatric unit for two years and has since moved to the outpatient side. She has participated in research, presented multiple times on pediatric issues, teaches new nurses about transition of care and instructs in the CRRN certification course.

Susan Labhard, MSN, RN - Susan has worked at Shriners Hospital-Portland, OR and has been in the field of Pediatrics since 1977.  For the past 16 years, she has worked as the Transitions Nurse Specialist heading the program to assist youth and their families in their transition to adulthood.  She has a BS and MS in Nursing and a BS in Child Development/Family Relations.  Susan is a seasoned national and international presenter and has published several articles in the field of transitions. Susan is the past chairperson of AACPDM-Lifespan Care Committee. Working with the patient care team and community, Susan uses positive and creative approaches, and provides a person-centered approach to assist youth with child-onset disabilities to maximize their potential and improve their quality of life.

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Speakers:

Carol Mason Shrader - Carol is mother to young adult triplets, two of whom have cerebral palsy, plus a teenage daughter. In 2008, her then 11-year-old son Mason created a blog — The Blessing Counter -- and encouraged her to write. His willingness to have his story told so that even just one family could find hope in the journey of raising children with cerebral palsy inspires her still. She has shared the story of her family around the world and recently wrote a children’s book, “Helix Rolls into a Sleepover.” Carol holds a B.A. in Communication from Mississippi State University and is working to complete her Master’s Degree of Education at Loyola University in Chicago, IL. Carol serves as Policy Director for the Delaware State Council for Persons with Disabilities.

Benjamin Shrader - is an activist with cerebral palsy. He is the Director of R I SE (Re-defining Independence and Social Empowerment), a fledgling self-advocacy group dedicated to giving people with disabilities a space to unlock their best selves. Benjamin is also the Chair of the Delaware State Council for Persons with Disabilities. In his spare time he enjoys reviewing movies, reading about theme parks, and memorizing Star Wars trivia.

"PADDLE: A tool for advocating"

Spencer Bowersox - Spencer is a social worker with experience working with children with disabilities. Spencer has worked as the social worker for the Technology Assisted Children’s Home Program, which assists and supports individuals with complex medical conditions; as well as helping their families navigate psychosocial and medical concerns while promoting support and empowerment. Recently, he has transitioned to the Neonatal Intensive Care Unit within Children’s Hospital to support and ensure caregivers and parents are provided dignity and respect during a difficult and likely unanticipated event related to the birth of their child.

“Effective Parent Advocacy in Education”

Alison Morse- Alison is the Senior Manager – Advocacy and Family Engagement for Easter Seals Ontario. In this position, Alison is responsible for government relations and advocacy. Alison manages the Easter Seals Special Education Advisory Committee (SEAC) program and has been a SEAC member since 1992. Most recently, Alison is a member of the Education Accessibility Standards Development Committee for Kindergarten to Grade 12.  Alison is also the lead for enhancing child and family support by providing information, engaging families in workshops, and seeking child and family advice for the organization. Alison has been providing parent workshops for almost 30 years, and has developed a variety of articles to support families on the Easter Seals Kids at School Website. She is also the parent of a young woman who has cerebral palsy.

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Speakers:

Andrew Hill - Andrew is 17 years old and in grade 12. He loves acting, reading, playing sledge hockey, and video games. Andrew was born at 32 weeks gestation, due to his prematurity he sustained a brain bleed that led to his diagnosis of cerebral palsy.  Andrew aspires to work in broadcast in either radio or sports.

Casey O’Dwyer - Casey is a Pediatric Physiotherapist who graduated from Brock University with a Kinesiology degree and the University of Toronto with a Masters of Science in Physical Therapy. She has spent her physiotherapy career in Pediatrics in a variety of settings including medical and rehabilitation clinics, home and school support and community recreation programs. Casey exudes her passion for pediatrics by tirelessly supporting the families and children she meets in her practice. In her time off, she enjoys travelling with her family and spending sunny days at her cottage.

Darcy Fehlings, MD - Senior Clinician Scientist; Developmental Pediatrician at Holland Bloorview Kids Rehabilitation Hospital. Dr. Fehlings innovates and evaluates neurorehabilitation treatments for children and youth with cerebral palsy. She also leads the Cerebral Palsy Discovery Lab.