Dear TIMS Community-
This post has been a long time coming. I am so glad -and relieved- to finally be able to officially tell you all about the professional organization that a group of us have been building: CCSVI Alliance.
CCSVI Alliance, Inc. is dedicated to educating patients with research-based information, providing tools for patients to advocate for themselves, and supporting medical professionals' exploration of Chronic Cerebrospinal Venous Insufficiency in the U.S.
This undertaking is the real deal: we had one of the U.S.’s best law firms (working pro bono) get us official 501c (3) status, and our Board of Directors and Advisory Board are filled with knowledgeable, experienced, well-connected and devoted people. We wanted to do this right- and we appreciate your patience while we got the group up and running.
Our organization consists of many TIMS members - - people who studied, debated and wrote about CCSVI from the beginning. We've been reaching out to the medical community, and getting ourselves and loved ones tested and treated. There are patients of Dr. Dake’s at Stanford- where the research first took off, people Dr. Haacke tested, patients who went through Buffalo for testing, and people who found, inspired, and were treated by Dr. Sclafani (and other doctors who currently are choosing to be quiet). We have had all the tests and procedures, read all the articles, and talked with all the experts. And now we want to make CCSVI accessible to more people.
Making the testing and treating of CCSVI a reality will take an enormous amount of effort over many years. There will be studies and trials, charges and counter charges, mistakes and learning. CCSVI Alliance is uniquely poised to foster the understanding and connections necessary to hasten and expand CCSVI efforts during this time.
We are continuously doing outreach to the medical community, and our connections to the doctors and researchers are our strong point. (We’ve surmounted the language barrier of medicalese!) The researchers and doctors trust our input - - we can inform them of the patient perspective and know how to help them. Testing and treating CCSVI on a large scale requires this kind of serious-minded collaboration.
We bring a lot of knowledge, passion, and empathy to this effort. Our website will be filled with original content that discusses CCSVI in both a basic and more in-depth way. While you may have some sense of the people actively involved from our online exchanges over the years (see the list at the end), the way we have collaboratively applied our personal and professional resources to this undertaking is unique.
Our efforts began on TIMS so I wanted you all to be the first to know. I became Cheerleader three years ago for Jeff. His MS diagnosis sent me searching online, as I tried to understand his new disease and how I could help him live with our new reality- day by day. Becoming a cheerleader for CCSVI has been an unforeseen and humbling experience for me and Jeff. Most encouraging has been witnessing the group effort behind this new organization: we have an amazingly dedicated and diverse group working hard behind the scenes- for no pay- just to take this research out into the world. (Paid professional staff is coming – like I said, this is the real deal.) Later this spring when we formally launch ccsvi.org- you'll find out about it on this site. I really think it will be a great resource for people interested in understanding CCSVI in a clear and even-handed way. We are looking forward to your being a part of it.
and some significant others whose dedication is astounding!
Last edited by cheerleader
on Mon Mar 08, 2010 7:00 pm, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09