Seven months ago a small group of passionate individuals formed CCSVI Alliance with a clear mission: to educate patients with research-based information, to provide tools for patients to advocate for themselves, and to support the medical professional’s exploration of chronic cerebrospinal venous insufficiency (CCSVI). CCSVI Alliance has accomplished much in its first months as a professional organization -- please see the summary below and share it!
Over the coming months they will continue to work hard as they complete their strategic plan, raise funds to enhance CCSVI Alliance and fund CCSVI research, and expand on existing efforts to educate patients and support medical professionals.
Your interest and support has been key to all that has been accomplished and I hope you will join in financially supporting CCSVI Alliance, inviting your friends and family to also contribute and continue to spread the word about their important work. Donations may be made on-line at the "Helping the Cause" page of http://www.ccsvi.org/ or by sending a check to:
CCSVI Alliance, Inc.
22 Tommys Path
Northford, CT 06472
Here is the quick update on what has been accomplished in their first seven months together!
Educating Patients & Supporting Medical Professional Exploration
* Launched website http://www.ccsvi.org/ on July 2011
- Original analysis of published materials for those new to CCSVI and those well versed (medical content reviewed by professionals)
- Exclusive interviews with professionals and patient profiles
- Comprehensiveness, design, and quality praised by patients and professionals worldwide
- Made connections across disciplines to advance research in CCSVI on behalf of Hubbard Foundation, International Society of Neurovascular Disease (ISNVD), and Society of Interventional Radiology (SIR)
- Met with professionals at the Annual MS Consortium meeting – June 2010
- Participant/speaker at the Symposium on Testing and Treating CCSVI, Brooklyn, NY – July 2010
- Guest member of Endovascular.org – participating in an interactive online forum focused on CCSVI where medical professionals learn from each other
- Asked to participate at the International Society of Endovascular Therapy (ISET) in 2011
Building a Professional Organization
* CCSVI Alliance, Inc. – organized February 2010; non-profit status received May 2010
- Legal documentation by Skadden, Arps, Slate, Meagher & Flom LLP (services donated)
- Branding and Identity by Onoma LLC, Identity & Media Design (services donated)
- Public Relations by Crenshaw Associates (services donated)
- Formation of Patient Advisory Board (PAB)
- Executive Director (TBA) – identified outstanding candidate based on consultations with other disease non-profit executive directors and Board members
Thank you for all you’ve done to assist CCSVI Alliance! We look forward to your continued support, input, and assistance in helping us reach our goals.
To read about my personal CCSVI diagnosis and treatment experience, click here.