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!
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.
Invited to become a contributor for two large publications: Rare Disease Report and The Mighty!
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!
Website: www.wstfcure.org
Credits:
All Photos are my own or were created with royalty free or permitted for commercial .