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Wednesday, August 28, 2013 10:44 PM | CCSVI Alliance Volg link

  

As the summer activities begin to wind down, I wanted to update you on what the Alliance board members will be doing in the coming months. 


CCSVI Alliance Website

CCSVI Alliance has recently posted a new video on the website.  Dr. Meredith Englander, from the Albany Medical Center discusses what she knows about CCSVI.  Recorded at the Alliance’s 2013 Doctors’ Roundtable in New Orleans, Dr. Englander presents her observations from the last several years and why she thinks further research into CCSVI is important. 

In the next few weeks, we will be posting  Dr. Salvatore Sclafani’s audio presentation “Possible Causes of Non-Response and Early Reoccurrence to Interventional Treatments  of CCSVI” and Dr. Scott Rosa’s video presentation “Observations at the Cranio-Cervical Junction Including Treatment of Cervical Spine Misalignments, CTE and Observations of Cerebrospinal Fluid Flow”.  Both presentations are very interesting as they offer new observations within the presenter’s field of expertise.



Joan Beal to Speak at NCS Conference

CCSVI Alliance’s founding and current board member, Joan Beal will be speaking at the National CCSVI Conference in Sherbrooke, Canada September 28th and 29th. link In the CCSVI Internet world, Joan is known as the “Cheerleader”.  She began a medical journey in 2007 when her husband, Jeff, was diagnosed with MS.  Determined to find answers for Jeff, she started her research; she authored a paper on endothelial health and sent it off to Dr. John Cooke at Stanford University.  The dots started to connect – first to Dr. Paolo Zamboni and his hypothesis of chronic cerebrospinal venous insufficiency (CCSVI) and then to Dr. Michael Dake, a well known vascular surgeon at Stanford Univ.  Her tenacity paid off… treated by Dr. Dake, Jeff was the first person in the U.S to undergo venous angioplasty for CCSVI.  To her credit, Joan did not stop once her husband was successfully treated.  She understood the need for patients to be well informed as the research became available.   Teaming with a few other dedicated individuals, Joan organized CCSVI Alliance.    And, as many of you know she went on to administer her own Facebook page on CCSVI. link  Joan has spent countless hours perusing the Internet, finding relevant research, and then delivering it to her audience in an easy to read summary on her Facebook page.  Thanks Joan for your tireless efforts.  You have been a mentor, a cheerleader and a guiding light for many pwMS. 

And, talking about the Beals, congratulations to Jeff!  His music composition for the TV show “House of Cards”  has been nominated for two Emmy Awards link

Enjoy listening to Jeff’s powerful music here. link


FDA

This week I will be attending a FDA workshop as a new recruit to the FDA Patient Representative Program.  I was encouraged to apply to the program soon after the FDA issued the May 2012 alert on CCSVI procedures.  This summer I have participated in webinars covering a wide range of issues affecting patients and caregivers.  In listening to other patient representatives, it is quite apparent that no matter what the disease is, we all are striving for the same goal.  We want our experience with a disease and its treatment to make a difference for those who will be challenged in the future.   The FDA is currently implementing a provision in the FDA Safety and Innovation Act of 2012 requiring patient involvement in the drug approval process.   Learn more about the FDA Patient Representative Program link

The program offers a unique opportunity for the patient reps to raise awareness and to advocate for the patients and caregivers and, importantly, the treating physicians.  It is extremely important that all be heard in the regulatory process.


ISNVD

I am looking forward to the International Society of NeuroVascular Disease (ISNVD) Conference to be held the weekend of Feb 7-9, 2014 in San Francisco at the Marine’s Memorial Club and Hotel.  ISNVD President, Dr. Michael Dake – Department of Cardiothoracic Surgery - Stanford University, has been actively involved in the research, treatment and presentation of CCSVI in the U.S. since 2009. Dr. Dake told the Alliance,   “I believe the program for the upcoming 2014 ISNVD Annual Meeting is the most interesting yet. I am really excited about the invited speakers who will join us to address a broad range of topics, including arterial, venous, and CSF flow. They will help us explore what constitutes normal flow, what causes flow disturbances, how flow is quantified and how perfusion and drainage abnormalities are associated with disease. Again this year, we will feature competitively selected scientific abstracts submitted from around the world to compliment the invited lectures.”

The preliminary schedule for the scientific meeting has been posted on the ISNVD website. http://www.isnvd.org/.   We will keep you updated as the panel of speakers becomes available.

 The International Society for NeuroVascular Disease(ISNVD) is a non-profit professional association devoted to furthering the development of research for neurovascular related diseases - including those of the extracranial venous system that may contribute to development of chronic cerebrospinal venous insufficiency (CCSVI).


CCSVI Alliance Patient Advisory Board 


The Alliance is extremely fortunate to have dedicated people who volunteer their time and their expertise to keeping the organization running on a day to day basis.  From maintaining the research database, to writing thank you notes, to answering emails, these individuals have been extraordinary.


We also have a couple of our PAB members, who on their own, have made a difference to people with MS.  Marc Stecker's blog Wheelchair Kamikaze link  is one of the best MS blogs. Nicki Watts shares the latest MS research on her CCSVI Florida FB Group. Recently, Nicki was successful in securing a So. Florida imaging center that will use Dr. E. Mark Haacke's protocol to screen pwMS. link

Congratulations, Nicki!  Marie Rhodes, author of the book CCSVI as the Cause of Multiple Sclerosis, is now guiding patients through the process of stem cell treatment. 


Lastly,  I would also like to say THANKS to all of you.  Your continued support of CCSVI Alliance has reinforced the board's committment to the patient community. 


Be healthy,

Sharon Richardson