Member Spotlight: WSCTF

Worldwide Syringomyelia & Chiari Task Force’s purpose is to educate the world about Syringomyelia. The organization provides those affected, with hope by advocating research for a cure. As the organization grows, it will provide direct assistance to those diagnosed with Syringomyelia by providing durable medical equipment to all who qualify by having a letter from their treating physician confirming diagnosis & disability; and provide excellent resources for continuity of care from childhood through adulthood.

1. What does it mean to you personally to be a patient organization serving the rare community?

Serving the rare community as a patient-centered organization is an honor!  It means saving lives of thousands of children and adults through our educational programs and projects aimed at positively impacting the medical community and public to open doors of new opportunities for all bravely battling Syringomyelia & Chiari daily!

2. What do you find your patient community values most from your organization?  

Our patient community values the “family atmosphere” of our organization.  We take time to listen to each request and encourage ongoing dialogue between our members and the medical professionals within our organization in order to increase understanding of the challenges faced by our members when they go to their appointments.  We also offer different types of educational materials so that if one approach does not work we are happy to try another one and our members love the variety of educational choices.  Our members love the fact that we focus on the entire body and all of the systems instead of just one part.  We customize approaches based on member need.  We encourage support for our members and their families.  In addition we are strong advocates for our members and they love our proactive approaches!

3. What are some of the challenges your organization has faced?

An ongoing challenge our organization has faced from the beginning is the lack of knowledge about the disease Syringomyelia in the medical community.  I have to admit working as a RN for 15 years I had never heard of it prior to being diagnosed myself.  I understand the challenges.  I do not believe it is due to the medical professionals not wanting to learn about the disease….I truly believe it is just not mentioned as much.  This is what we are focusing on because increasing educational materials and teaching tools for physicians of all specialties and nurses will bring the most positive change to direct patient care and outcomes.  We offer solutions to this by our educational materials patients can take with them to appointments, our nurse educators who are proud to offer inservices/CME credits to medical professionals to learn about Syringomyelia, and we hope to attend nursing conferences in this next year to increase awareness as well!
4. What’s been your most successful awareness campaign and/or fundraising event?  Our organization led by nurses and physicians stand behind Syringomyelia as a disease!    As part of this focus we asked our members to help us increase Syringomyelia disease awareness across the states and in their countries!  We are very proud of our members for assisting us in awareness across the 50 states and around the world!   One major accomplishment for our organization was receiving numerous proclamations declaring Syringomyelia as a disease for the month of May!  We are proud to report that our organization received over 20 proclamations from the 50 states declaring Syringomyelia as a disease and highlighting the importance of implementation of a medical treatment protocol and continuity of care across all specialties to take care of children and adults with Syringomyelia!  We are now working within the medical community to increase understanding of this disease and implement guides that will improve direct patient care.  We thank our members for their hard work and the success of all these proclamations for Syringomyelia!  We are still receiving proclamations this month and it’s exciting!