CCSVI Alliance Update

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

CCSVI Alliance Update

Postby Sharon » Fri Sep 24, 2010 2:08 pm

Dear Alliance Supporters--

We have been busy!

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 we will continue to work hard as we complete our strategic plan, raise funds to enhance CCSVI Alliance and fund CCSVI research, and expand on existing efforts to educate patients and support medical professionals.

Launched website www.ccsvi.org on July 2010
o Original analysis of published materials for those new to CCSVI and those well versed (medical content reviewed by professionals)

o Exclusive interviews with professionals and patient profiles

o Comprehensiveness, design, and quality praised by patients and professionals worldwide

Brought together medical professionals
o Made connections across disciplines to advance research in CCSVI on behalf of Hubbard Foundation, International Society of Neurovascular Disease (ISNVD), and Society of Interventional Radiologists (SIR)

Served as key resource for CCSVI community
o Met with professionals at the Annual MS Consortium meeting – June 2010

o Participant/speaker at the Symposium on Testing and Treating CCSVI, Brooklyn, NY – July 2010

o Guest member of Endovascular.org – participating in an interactive online forum focused on CCSVI where medical professionals learn from each other

o Asked to participate at the International Society of Endovascular Therapy (ISET) in 2011

* S. Richardson, President will be a participant in the town hall meeting along with Dr. Michael Dake, Dr. Salvatore Sclafani, and Dr. Paolo Zamboni.

Building a Professional Organization
CCSVI Alliance, Inc. – organized February 2010; non-profit status received May 2010

o Legal documentation by Skadden , Arps, Slate, Meagher & Flom LLP (services donated)

o Branding and Identity by Onoma LLC, Identity & Media Design (services donated)

o Public Relations by Crenshaw Associates (services donated)

o Formation of Patient Advisory Board (PAB)

o Executive Director (TBA) – identified outstanding candidate based on consultations with other disease non-profit executive directors and Board members

In addition, the logo of CCSVI Alliance was recently recognized by an international expert in the use of identity as a tool in marketing and managing! (For details visit www.identityworks.com/probono/CCSVI.htm.) We are working hard to create a professional and respected organization that can promote CCSVI.

Your interest and support has been key to all that has been accomplished and we hope you will join us in financially supporting CCSVI Alliance, inviting your friends and family to also contribute and continue to spread the word about our important work. Donations may be made on-line at the "Helping the Cause" page of www.ccsvi.org or by sending a check to:

CCSVI Alliance, Inc.
22 Tommys Path
Northford, CT 06472

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!

Sharon Richardson,
President, CCSVI Alliance
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Postby David1949 » Fri Sep 24, 2010 3:18 pm

I read the article; "CCSVI Alliance presents an exclusive interview with CCSVI’s “first skeptical neurologist.”"

That was a good article. Hopefully other skeptics will come around too. I also appreciated Dr. Salvi's comment on PPMS, that Liberation seems to stop the progress of the disease. I'm at EDSS 5.5 now. Stopping the progression here would be great. I can still do things, but if the disease progresses then the next milestones will be wheelchair, then bed , then dead. I think many other folks are in the same situation. Also stopping the disease is necessary before we can have much hope of repairing the damage, via stem cells or other technology.
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Postby Cece » Fri Sep 24, 2010 3:21 pm

o Legal documentation by Skadden , Arps, Slate, Meagher & Flom LLP (services donated)

o Branding and Identity by Onoma LLC, Identity & Media Design (services donated)

o Public Relations by Crenshaw Associates (services donated)

A big thank you to these businesses that donated their services!
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Postby welshman » Fri Sep 24, 2010 7:42 pm

And a very big thank you to all who have devoted their time in making the CCSVI Alliance site available to us all. :D
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Postby Johnson » Fri Sep 24, 2010 9:20 pm

welshman wrote:And a very big thank you to all who have devoted their time in making the CCSVI Alliance site available to us all. :D

Imagine a grinning, thumbs-up emoticon here (in agreement).
My name is not really Johnson. MSed up since 1993
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Postby sbr487 » Fri Sep 24, 2010 11:59 pm

I think this group (which I would like to be considered as a part of) has given a whole new dimension to patient advocacy ... Anything I say would be less, so Alliance gang, keep up the good work!!!
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Re: CCSVI Alliance Update

Postby NHE » Sat Sep 25, 2010 12:31 am

Johnson wrote:
welshman wrote:And a very big thank you to all who have devoted their time in making the CCSVI Alliance site available to us all. :D

Imagine a grinning, thumbs-up emoticon here (in agreement).

        ImageMMMImageMMMImageMMMImageMMMImage
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Postby Ruthless67 » Sat Sep 25, 2010 8:39 pm

Thank you Alliance Team!!!!!!!!!!!
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