Ask the Expert Podcast – The Power of Sharing Stories
March 31, 2016
Medical professionals are not the only experts in rare neuroimmune disorders. Following a diagnosis of TM including AFM, NMOSD, and ADEM, individuals, families, and caregivers become experts, advocate for their own health and well-being, share their stories, and shape their futures. Join Courtney Robinson from Texas and Elisa Holt from Massachusetts as they share their journeys and lessons learnt as mothers of sons diagnosed with a subtype of Transverse Myelitis called Acute Flaccid Myelitis.
Email us at [email protected] with your questions for our community experts on this topic The Power of Sharing Stories.
During the podcast, you can interact with the speakers and the moderator to ask questions through the chat function using the GoToWebinar feature.
* The Executive Committee and the medical and scientific council of SRNA determine the topics and content of the podcasts.
About Our Guest Speakers
Elisa Holt is a dedicated wife, mother, caregiver and community contributor. She is a graduate from Salem State University where she received her B.S. degree in psychology with a clinical concentration in pediatrics. Elisa is a childhood cancer survivor who has worked closely with the Leukemia and Lymphoma Society Massachusetts Chapter since 1999 in their advocacy and funding efforts. Her focus changed gears when her son Noah was diagnosed with Acute Flaccid Myelitis in October of 2014. Since then Elisa and her husband, Mitch, have focused their efforts on how to “Take Back AFM”. She is the current Mrs. Massachusetts United States 2015 and is using her title and position to bring awareness to the rare neuroimmune disorders community. Elisa, Mitch and their friend Gayla have volunteered their time and are directing the 2016 Massachusetts Walk-Run-N-Roll this fall to benefit the Transverse Myelitis Association.
Courtney Robinson is a mom of 2, Kingston and Savannah Robinson. Kingston, her oldest was diagnosed with transverse myelitis at the age of three in July 2014 (later we were informed that he had acute flaccid myelitis). He could not walk and could not raise his right arm. Through 8 months of therapy he’s is back to walking, running and using his right arm. Since his onset of TM/AFM, he’s completed 3 seasons of soccer, swim lessons, and is about to start his first season of flag football. This disease has changed everyone’s life in her family especially her son’s. Courtney is a passionate advocate and is willing to do anything and everything to raise awareness for these disorders.
Rebecca Whitney is a mom of three, the youngest of whom was diagnosed with transverse myelitis at four months of age. She is committed to learning, educating, and advocating about rare neuroimmune disorders, particularly in the pediatric population. As the Pediatric Programs Manager for SRNA, she works with patients, families, medical personnel and the executive team to further research, networking, and support of our children.
