A registered nurse with a rare disease called Syringomyelia founded Worldwide Syringomyelia & Chiari Task Force; a 501c3 nonprofit in 2014. The mission of WSCTF is to deliver targeted up to date education about the symptoms and potential complications of Syringomyelia and Chiari. Educational outreach is targeted across all medical settings to empower both patients and medical professionals to increase understanding and promote patient safety with excellent bedside care. We accomplish this by offering free inservices and HIPAA compliant appointments led by registered nurses. All educational materials are approved by our medical advisory board.
Numerous media outlets were contacted and successful interviews completed to increase awareness and understanding about SM and Chiari!
Efforts included interviews with Gwinnett Daily Post, Cosmopolitan, Huffington Post, and more!
During the first two years we passed over 28 proclamations acoss numerous states to increase awareness and understanding about Syringomyelia and Chiari Malformation! We have observed growth each year!
Syringomyelia Proclamation for Georgia (one example of many)
First published book by a nurse with Syringomyelia.
Our Executive Director authored a book about her rare journey to inspire others and donated 100 percent of the proceeds back to WSCTF to support the mission of education. It's available on Amazon and we participate in Amazon Smile!
Multiple educational and awareness posters and videos shared on social media to increase attention to the disparities of Syringomyelia and Chiari.
Spearheaded Syringomyelia MRI awareness Sweatshirts to increase awareness!
Rare Disease Report
Invited to become a contributor for two large publications: Rare Disease Report and The Mighty!
The Mighty Article
WSCTF attends Rare Disease Day events at the State Capitol in Georgia each year. In a separate role, Beth Nguyen our Executive Director volunteers as a NORD Georgia Ambassador to spearhead change for all rare diseases and lead Rare Disease Day events in Georgia. This year's Rare Disease Day is February 22nd, 2019 from 8 to noon at the GA Capitol.
Recipient of the NORD 2017 Rare Impact Award for serving as a strong leader for patients with Syringomyelia and Chiari as a medical professional and rare patient. Recognized for spearheading the first Model of Care Advocacy Tool for Syringomyelia and Chiari Malformation.
To Date: Over 500 medical professionals served, over two hundred in-services completed by WSCTF registered nurses, over 50 appointments completed since launching the new appointment scheduler in October 2018, and 2,276 members served. We truly care about all those who are a part of our WSCTF family and look forward to all we will accomplish in 2019!