Worldwide Syringomyelia & Chiari Task Force Inc.

Worldwide Syringomyelia & Chiari Task Force Inc. is a 501c3 organization providing a voice for men, women, children, and canines who suffer in silence. We advocate for all who bravely battle Syringomyelia, Chiari, and the complications that co-exist with them. Our mission is to educate the world about Syringomyelia, Syringobulbia, Chiari, and their complications. Our organization is led by active nurses and physicians to bridge the gap between current research and updated education to deliver updated education to the public and all medical disciplines beginning with primary care. We would like to improve direct medical care delivery through implementation of effective advocacy tools and peer to peer advocacy in medicine to improve the quality of life for men, women, and children worldwide! The ultimate goal is to define specificity to these disease processes in order to improve care and outcomes which will result in decreased morbidity/mortality and improved quality of life! We will accomplish our goal of education through our programs including the launch of our worldwide registry, free peer to peer appointments, educational posters and videos, 24 hour online support groups for member, caregivers, and parents, and specifics of Syringomyelia and co-existing complications project for outreach into the communities we serve. Our goal is to measure improvement in direct medical care by implementation of awareness programs in healthcare, educational inservices with healthcare professionals, registry participation to monitor day to day challenges of the disease processes and symptoms among our members to aid understanding in disease, and ongoing development of tools to increase understanding about spinal cord and spinal nerve injury in our community as well. Our goal is to develop excellent standards of care for our community to aid healthcare professionals in excellent care practicies and preventative care to improve patient outcomes and help save lives! We are partnered with several organizations to reach out to healthcare professionals, other nonprofits, members, and public including NORD, The Mighty, and Rare Disease Report. In this manner we have a larger voice to make a difference!

We strongly advocate for collaboration of all specialties to care for individuals with Syringomyelia, Syringobulbia, Chiari, and their complications. We do this through peer to peer medical professional inservices to physicians and nurses. We provide training sessions for medical professionals as well to learn more about Syringomyelia and Chiari. We have developed videos, posters and media to use as teaching tools. In addition, we are working on increasing understanding about the need for educational programs in schools and medical schools to increase understanding about SM, Chiari, and their complications. We are spearheading work on the first medical treatment protocols for Syringomyelia and Chiari to improve direct patient care! We are working on the launch of the first International HIPAA compliant Syringomyelia and Chiari worldwide Registry for children and adults to collect up to date data on these diseases worldwide to increase understanding of how they affect daily life to increase understanding for public and healthcare professionals! We are also working on the Specifics of Syringomyelia and it's co-existing complications project in order to further specify the disease to apply it in the practical setting by exploring symptoms linked to spinal cord and spinal nerve injury in our population. We are reviewing new minimally invasive approaches to therapy to reduce recovery times and improve patient outcomes in the direct care setting. We author medical publications to reach medical professionals through our partnerships with Rare Disease Report and NORD. We author articles for the public through our partnership with The Mighty. We utlize patient-centered approaches in all that we do because we care about the well being of the men, women, and children who are affected.

We will broadcast live presentations and videos on demand on our website, You tube, Facebook, Twitter, via NORD, via Rare Disease Report, and via The Mighty to help educate individuals all over the world! We have partnerships with two media channels....one broadcasts to millions of medical professionals...another broadcasts to millions of patients. Our physicians are actively working on presentations & models of care. We are going to present protocols to the medical community based on research and updated data in 2018. We also have exciting new educational tools to benefit everyone! We will provide direct resources and educational links to individuals who are battling Syringomyelia, Syringobulbia, Chiari, and their complications by offering free appointments, 24 hour online support groups moderated by nurses, and connecting them to additional free resources for travel assistance, flight assistance, information on how to apply for a disability canine, member publication opportunities, educational video production to empower the patient voice, and more! We broadcast stories of hope on our website from our members and healthcare professionals to strengthen and empower our community.

Our organization has now passed proclamations in over 30 of the 50 states recognizing Syringomyelia as a disease. It emphasizes the importance of having a medical treatment protocol and recognition of spinal cord and spinal nerve injury and complications with SM and Chiari to increase understanding in medicine. In addition the proclamations designate the month of May as Syringomyelia Disease Awareness Month.

We have two online petitions advocating for improved healthcare education for SM and Chiari with over 10,000 signatures. Our medical board is growing. We were awarded the first worldwide registry for SM and Chiari through our partnership with NORD to support education and research; we are close to launching. We attended and spoke on behalf of patients with SM and Chiari at the Georgia Captol for 2018 Rare Disease Day. We spoke at Emory University in 2017 about Syringomyelia and Chiari to a group of medical professionals. We were invited to the CDC to speak about the importance of recognition of SM and Chiari in medicine. Our Executive Director was awarded the 2017 NORD Rare Impact Award. Our executive director published a book 2018 titled Beyond Syringomyelia to increase understanding and it has a 5 star rating on Amazon...100 percent of the book sales are donated back to the nonprofit to support education. We have conducted numerous interviews with Fox 5, Cosmopolitan, Huffington Post, and Gwinnett Daily Post to increase awareness about SM, Chiari, and their complications. We are working on increasing understanding about spinal cord and spinal nerve injury as it relates to our diseases, educational outreach to healthcare professionals, development of additional educational videos and posters, and launching a video production project to capture the day to day struggles faced by our members who would like to share their story to aid in public and healthcare education. We continue to strive for excellence in patient centered approaches with a professional approach to multidisciplinary healthcare professional education.