July 26, 2010
Dear MS Patient & Caregiver,
On February 16, 2010, CCSVI Alliance formed as a 501(c)(3) nonprofit and today we
launched www.ccsvi.org for multiple sclerosis (MS) patients, caregivers, and medical
professionals in order to learn about a new condition, Chronic Cerebrospinal Venous
Insufficiency (CCSVI), that may be significantly related to MS. The site will be
a resource for you to explore many aspects of CCSVI. It also will provide information
to you to advocate for diagnosis and treatment of the condition, and to donate to
the cause of advancing CCSVI research.
The site explains diagnostic and treatment approaches to CCSVI, answers frequently
asked questions, addresses myths, and provides a history and timeline of the relationship
between CCSVI and MS. There are patients’ perspectives -- first-person accounts
of what it’s like to be diagnosed and treated for CCSVI. The website is comprised
of educational information at a basic and advanced level, including links to research
papers and a glossary of common terms. There also is information about donating
for CCSVI research.
CCSVI Alliance began with the efforts of individuals who are intimately familiar
with multiple sclerosis and CCSVI. Their levels of disability range from mild to
severe. These individuals are committed to the exploration of the debilitating disease.
MS patients and caregivers are demanding accessibility to the simple endovascular
treatment while some in the medical community are advocating for a slow and cautious
approach. CCSVI Alliance will work to build the bridge between these two disparate
opinions.
Chronic Cerebrospinal Venous Insufficiency, a syndrome of the extracranial veins,
is a new condition identified in 2008 by Italian vascular surgeon and researcher,
Dr. Paolo Zamboni. Initial studies indicate a strong correlation with multiple sclerosis.
Research is underway to test the CCSVI hypothesis and develop standardized treatment.
CCSVI Alliance is a 501(c)(3) nonprofit. CCSVI Alliance 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. CCSVI Alliance will keep patients, caregivers and the medical
community current with the latest research, emerging practices, and patient perspectives.
The Alliance will attend conferences, speak with the medical and patient communities,
help bring together patients and doctors, and connect medical professionals with
one another. Please contact info@ccsvi.org
if you’d like to volunteer.
Website: http://www.ccsvi.org/
Sincerely,
Sharon Richardson
President