Causes: Alliances & Advocacy, Arts & Culture, Health, Voluntary Health Associations & Medical Disciplines

Mission: Educate the world about the disease Syringomyelia and Chiari Malformation. Our focus is to provide updated education to medical professionals of all specialties to improve direct medical care for individuals living with these diseases.

Results: We were instrumental in the passage of over 25 proclamations from the 50 states declaring Syringomyelia as a disease and recognizing it in the month of May for awareness. We provide 24 hour ongoing support to our members through our three Facebook member groups. . . one for members, another for families, and one for parents of children with Syringomyelia. We developed the first advocacy toolkit for Syringomyelia for members to use when they go to appointments. We are piloting a Model of Care for Syringomyelia and will be working on developing this further to decrease morbidity/mortality and save lives! We just launched the first Chiari Model of Care for advocacy at doctor's appointments. We are working on launching the first worldwide natural history study and registry for Syringomyelia and Chiari as well. We are a patient-centered organization and we are strong advocates! We are Guidestar Platinum members and we are Amazon Smile participants!

Target demographics: Men, women, children and canines of all breeds bravely battling the disease Syringomyelia; and Chiari Malformation all over the world!

Direct beneficiaries per year: Thousands of men, women, and children with a diagnosis of Syringomyelia and Chiari by establishing educational nurse led initiatives to provide updated education about Syringomyelia and Chiari to medical professionals of all specialties, new educational materials to members by social media, and provided a voice for members by establishing a sharing platform for them to share their journey with the diseases to increase public awareness . We established a social media teaching video about Syringomyelia and Chiari as well as developed the first model of care for Syringomyelia to share as an advocacy tool at medical appointments to aid in understanding of the disease. We are increasing understanding about canine Syringomyelia and Chiari through social media and sharing of stories.

Geographic areas served: Georgia with worldwide outreach.

Programs: Specifics of Syringomyelia & Chiari Project to further identify complications of Syringomyelia and Chiari, WSCTF Syringomyelia & Chiari Worldwide Registry, Durable Medical Equipment & Prescription Gift Card Assistance Programs to qualified individuals with a diagnosis of SM and CM (as funds are available) , and our nurse led education/advocacy programs to increase understanding across all medical disciplines about Syringomyelia and Chiari; to improve direct patient care, address unmet needs, and bridge existing gaps by providing resources to care providers.