ZooneyFest/Betterment partnered with Team Gleason to identify, Susan, a patient with ALS who has the courage and desire to have an adventure she would not otherwise be able to have given her disease progression. Susan is completely immobile except for her head. Her Son Julian is a Neurology Resident at University of South Carolina Medical School and will specialize in ALS once he enters practice. Susan will document her trip and post it on The Team Gleason website to serve as an inspiration and motivation to others to live life to the fullest, not matter your circumstances.
Susan is active in the local ALS chapter along with John & Diane Zunic, ZooneyFest committee members. They have had several conversations with her and her family about the Adventure. Susan testified before congress about the need for increased funding for ALS research and the need for technology (chairs, speaking devices, etc.) to be made available to pALS.