Chronic Cererbrospinal Venous Insufficiency (CCSVI) is a vascular condition that Dr. Paolo Zamboni, an Italian vascular surgeon, believes may be significantly related to MS. He contends that when normal blood flow is altered, especially reversed, the body may react with an inflammatory response like MS. Dr. Zamboni developed experimental treatments that involve clearing different kinds of obstructions in veins that drain the central nervous system. Similar interventions are now being researched at Stanford University and SUNY Buffalo. CCSVI has received much press this past year because Dr. Zamboni’s 2009 published findings pose a radical and controversial intervention for MS. News of it spread on the internet rapidly and many with MS became interested in organizing support to learn more about it. The MS professional community was initially skeptical because careful, comprehensive, evidence based research was not yet available.
Those interested in not shutting the door on CCSVI research and treatment and who were committed to learning more about it or had undergone CCSVI treatment, organized a grass roots movement called the CCSVI Alliance. On February 15, 2010, the CCSVI Alliance became a non profit organization, 501(c) (3), dedicated to building a bridge between those with MS and the MS professional community in order to promote education and active dialogue about CCSVI research and treatment.
The mission of the CCSVI Alliance is to debunk myths, provide up to date research findings, promote informed advocacy and sustain communication between those with MS, their caregivers and MS professionals. Their first goal was to create a user friendly website with state of the art technology that could facilitate clear, easy access to information. On July 26, 2010, ccsvi.org was launched!
The Philadelphia MS Examiner had the pleasure of meeting the first president of the CCSVI Allliance, Sharon Richardson. Sharon has MS and has undergone CCSVI treatment in Stanford, CA with Dr. Dake one year ago. She explains that the website’s logo: “opening veins…..opening minds….” is a way to remind the MS community that this website offers critical aspects of CCSVI theory from research to treatment that is reviewed by a world class team of MS and medical professionals. Information is presented in an organized friendly format so that anyone interested in learning more about CCSVIcan.
We hope our website has given the MS community a tool to make informed decisions and medical decisions concerning CCSVI.
The ccsvi.org website is impressive with its special features and unique approach. Some of its highlights include:
- “The Basics” tab with down to earth, fundamental info about the theory and treatment of CCSVI, including a glossary of terms
- an “Advanced Topics” tab with more advanced information that includes published articles, a FAQ and an identification of treatment risks listing
- an insights and discussion page by MS pts and their caregivers (Pt Perspective Tab) that provides frank dialogue and first hand accounts of CCSVI treatment
- a “How to Donate” tab that indicates how to help support CCSVI research and learn exactly where your financial support will go
- a Video presentation, one each month, that interviews key professionals working in the field of CCSVI research and treatments
The site is pleasing to the eye. There are large font sizes and suitable color artwork and icons for those with visual impairments. The screens are not crowded with information either. If users have questions or feedback, they can access the facebook page of the CCSVI Alliance and post them there.
SO CHECK IT OUT! The MS Community now has a central web address to get information we need about advancements in CCSVI theory, research and treatment.
For more info:
For a great, readable overview of CCSVI theory and current treatment by a MS neurologist, check out Dr. Jack Burks’ press release at the Multiple Sclerosis Association’s website: msassociation.org