Syringomyelia and Chiari Medical Advocacy
We establish advocacy programs worldwide by having our medical professionals provide updated education to nurses and physicians about Syringomyelia and Chiari Malformation as well as their co-existing complications. We are working on programs that are designed to offer CME credits to the professional to take a course, followed by a multiple choice quiz to signify understanding of the taught material, and a certificate printed to show participation in our program. We are able to start presenting our voice as a community impacted by Syringomyelia and Chiari to the medical community. Our Director of Education is a registered nurse who travels to nursing conferences to deliver education. We also have a nursing committee comprised of nurses from multiple disciplines and they are continually developing materials for education, webinars, and inservices aimed to increase understanding about Syringomyelia and Chiari Malformation across all medical disciplines.
We are spearheading the ongoing development of the first Multidisciplinary Model of Care Advocacy Tools for SM and Chiari to serve as an excellent supplement for medical professionals who work in direct patient care, so that they can serve as a helpful guide to help improve early recognition, continuity of care, collaboration across the disciplines, decrease complications, and most important help to save lives!
We are also launching the first Worldwide Syringomyelia & Chiari Registry that is HIPAA compliant. It will have multiple language capabilities. This registry is for adults and children all over the world as well as those who have passed away. Please feel free to visit our WSCTF Syringomyelia & Chiari Worldwide Registry information page.
We are involved with research and we are confident our registry will open doors to more research regarding Syringomyelia and Chiari Malformation.. You see, research will enable us to look at additional treatment choices for Syringomyelia and Chiari Malfomation that are less invasive, reduce hospitalization stays, lowers risks to the patient, identifies additional unmet needs for our community, and uncovers more cost-effective approaches for patients and their families. We will also be investigating additional cutting edge treatments aimed at reversing spinal nerve damage and paralysis. We are investigating an in-depth look at physical therapy with regard to Syringomyelia and Chiari.
We are working hard towards the implementation of direct patient programs for adults and children affected by Syringomyelia and Chiari Malformation. We are able to provide (upon qualification and availability of funds) durable medical equipment assistance. Requirements for qualification include a screening by our medical advisory board. The individual requires a letter from their treating physician confirming a diagnosis of Syringomyelia and/or Chiari Malformation and a prescription for the type of equipment required for their treatment plan to qualify for consideration. You may start the process through emailing us at firstname.lastname@example.org.
We can offer assistance with travel and free flight information through our partnership with PALS. Contact us by email at email@example.com to learn more about this amazing service or click on PALS to visit their website.
We can offer to connect you with another excellent service called Canine Companions for Independence and they have excellent information about applying for a disability dog for our members. Click here to visit their website today!
Our R.N. attorney is also assisting us in launching a program to educate attorneys in each state. Unfortunately, many who are disabled from Syringomyelia or Chiari lose their disability case because the attorney does not understand the disease processes. We are focused on changing this trend. We serve as your advocates and if you would like to provide your attorney or care provider additional information please feel free to download our WSCTF Advocacy Toolkit information found under TOOLS on the bottom of this page.
TOOLS: Updated Chiari & Syringomyelia Advocacy Model of Care Toolkits and the Spinal Nerve Presentation for Free Download See Below:
Click here to download our WSCTF Syringomyelia Advocacy Model in PDF
Click here to download our WSCTF Spinal Nerves Advocacy Presentation in PDF
Click here to download our WSCTF Chiari Advocacy Model in PDF
Click here to download our WSCTF Introduction Advocacy Letter, Mission, and Contact Information
Click here to download our WSCTF Vital Sign Health Tracker