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Wednesday, July 11, 2012 11:00 PM | Ken Torbert Volg link

he Annette Funicello Research Fund for Neurological Diseases (AFRFND) made an official press release about their new science advisory board today.  This is exciting news and it means we are finally at a point where things are going to get moving. 



The announcement can be seen here:



http://www.businesswire.com/news/home/20120711005332/en



I am really excited to be part of the advisory board because we will have an opportunity to review grant requests for promising research in the CCSVI arena.  There are a lot of good studies going already beyond the public eye that will aid in clarifying the real picture of MS, and it will be good to be able to help move this forward.  Marie  :-)



http://www.facebook.com/notes/chronic-cerebrospinal-venous-insufficiency-book/press-release-annette-funicello-research-fund/476760615684879


“Facebook Medicine” Prompts Global Collaboration for Annette Funicello Research Fund




LOS ANGELES--(BUSINESS WIRE)--The Annette Funicello Research Fund for Neurological Diseases has assembled a group of high profile physicians and scientists from around the world to serve as members of its new collaborative Science Review Board. The medical personnel that have joined together are all involved in research focused on treating Multiple Sclerosis, a neurological disorder that the former Disney legend and beach party star has suffered from for 25 years. Most recently, Jack Osbourne, 26-year-old son of Sharon and Ozzy Osbourne, was also diagnosed with the disorder that affects nearly 2.5 million people worldwide.


“I felt the online discussion was a revolutionary approach to moving research forward…Facebook medicine if you will”



The inspiration for creating Funicello’s Science Review Board was born in the social media platform Facebook in 2009. It was there, online, where thousands of MS patients worldwide started spreading the word about CCSVI (Chronic Cerebrospinal Venous Insufficiency), a vascular syndrome that impedes blood flow from the brain and spine and found in high incidence in patients with multiple sclerosis. The patient’s positive online “buzz” spread like wildfire and greatly accelerated the acceptance of what was considered a radical new approach to an old disease. It also generated the impetus for medical experts and scientists worldwide to seek grants to further research and begin clinical trials using a minimally invasive angioplasty technique to restore normal blood from the brain and spine. It has helped many MS patients to reduce their MS symptoms, but does not work for everyone. It is, however, a hopeful and different approach to treating the disease.


The CCSVI internet frenzy also caught the attention of Glen Holt, Funicello Fund Chairman and husband of the former Disney star. “I felt the online discussion was a revolutionary approach to moving research forward…Facebook medicine if you will,” he said. “It inspired our organization to put together a global Science Review Board, who will interact online to evaluate grant proposals for all promising MS and neurological disease research with CCSVI currently being one of our key areas of interest. Our hope is to open a global discussion among medical experts where insights and information can be shared for the benefit of all, especially MS patients.” A number of the world’s leading neurologists, interventional radiologists and scientists have joined Funicello’s Science Review Board. All will serve on a volunteer basis. They are:


Dr. Paolo Zamboni from the University of Ferrara in Italy who presented the first research papers on CCSVI in 2009; Dr. Michael Dake of Stanford University, a luminary in the field of cardiothoracic medicine and interventional radiology who treated the first US patients in a CCSVI pilot study; Clive Beggs, Ph.D., a Professor of Medical Engineering and expert in fluid mechanics and cell biology at the University of Bradford in the United Kingdom; Dr. David Hubbard, a board certified neurologist and co-founder of The Hubbard Foundation in San Diego; Dr. Salvatore Sclafani, an interventional radiologist and former Professor and Chairman of Radiology at the State University of New York, Downstate in Brooklyn; Dr. Sandy McDonald, vascular surgeon, owner of Barrie Vascular Imaging and pioneer in CCSVI treatment in Canada; E Mark Haacke, Ph.D., inventor of MR Angiography (MRA) and Director of Wayne State University’s MRI research program; Dr. Robert Zavadinov, Professor Neurology at the University of Buffalo; Edward C. Feldman, DVM, Professor of Internal Medicine and Clinical Researcher at the University of California Davis School of Veterinary Medicine; Dr . Ziv J. Haskal, vice chair and professor of Radiology and Surgery at the University of Maryland; Dr. Donald Ponec, interventional radiologist in San Diego specializing in venous intervention in CCSVI; Bart Locanthi, Ph.D., scientist at Google; and Marie Rhodes, RN, Seattle book author, MS patient and advocate.


The Annette Funicello Research Fund for Neurological Diseases is an accredited 501(c)3 non-profit organization whose mission is to fund research into the cause, treatment, and cure of Multiple Sclerosis and other neurological diseases. For further information or to donate to the fund, please visit www.annetteconnection.com.




Contacts


Annette Funicello Research Fund for Neurological Diseases
Lorraine Santoli, 914-519-6005
Executive Director
LSantoli@me.com




http://www.annetteconnection.com