The controversial theory that connects chronic cerebrospinal venous insufficiency (CCSVI) and multiple sclerosis will be thoroughly examined during the ISET Town Hall this morning. The idea that comprised blood flow in the veins that drain the central nervous system could cause MS in some patients was first advanced by Paolo Zamboni, M.D., one of today’s featured speakers. Dr. Zamboni’s intriguing and prom- ising work on the subject has prompted the establishment of a patient-advocacy organization know as the CCSVI Alliance, which supports continued research on the subject, as well as patient and physician education.
Sharon Richardson, president of the CCSVI Alliance, will speak today during the Town Hall to chronicle the journey of MS sufferers and what a potential breakthrough could mean to the as many as 350,000 indi- viduals in the United States stricken with the disease. She answered questions about the Alliance, which has additional information available for ISET attendees at a table exhibit in the foyer outside the Exhibit Hall.
ISET Today: What is the mission of the CCSVI Alliance? What are your goals for the current year?
Ms. Richardson: CCSVI Alliance promotes education and research about CCSVI and its relationship to multiple sclerosis (MS) by providing objective information to the MS community, supporting medical inves- tigations of CCSVI and fostering collaboration among patients, advocates and professionals.
What was the catalyst for the creation of the Alliance? How did it evolve?
A few members from an Internet forum for MS sufferers decided they would like to start a nonprofit to pro- mote education and research in this exciting new area. A small group of patients in the New England and Joan Beal, who was instrumental in introducing Dr. Paolo Zamboni’s research to doctors at Stanford, rec- ognized the need for a professional organization to try to tie together the patient and professional interests, and provide an objective presentation of the relationship between MS and CCSVI.
Tell us about those involved with the Alliance. What kinds of boards have you established, and what type of individuals serve on them?
We currently have two boards: the board of directors and the patient advisory board. There is significant diversity on the board of directors. All are MS patients who have been treated for CCSVI except for one member who is the spouse of an MS patient. We have a retired chief financial officer, a marketing consulting, a Ph.D., an engineer, an MBA, a musician and a sales executive. We have members on the West Coast, the East Coast and in the heartland. We are not an international organization at this point. We are concentrating on the CCSVI situation in the United States.
The patient advisory board currently consists of seven members, each of whom has MS, and each of whom has undergone CCSVI treatment. Members of this board have different areas of expertise that the organization calls upon for various projects.
We’ve also conceptualized a medical advisory board, which will consist of doctors and scientists interested in studying the relationship between CCSVI and MS. Although we have not formally established this board yet, several doctors and scientists have contributed to the organization by reviewing our content prior to publishing at www.ccsvi.org
What has been the reaction from MS sufferers to the Alliance? What are you hearing from them? How is the Alliance addressing their concerns, and what services or support do you offer?
We have received a very positive response from the MS community of patients, caregivers and medical professionals. Our website helps to educate those wanting to learn more about CCSVI. The medical content was reviewed by a world- class team of medical professionals, some of who are at ISET. The website includes an original analysis of CCSVI published research, tools and strategies for discussing CCSVI with doctors, including how to assemble an effective medical team, presentation of safety and risk, a database of all IRB- and NIH-approved CCSVI clinical trials and written perspectives by patients who have been treated for CCSVI. The exclusive, recorded interviews with medical and scientific professionals who are the leaders in the research and study of CCSVI have become a highlight of the website.
How is the Alliance reaching out to physicians and others in the medical community? What are you hearing from these folks?
Our outreach efforts to the medical community include the Endovascular.org forum where we host a CCSVI group. We have also established a relationship with the National Multiple Sclerosis Society and the Multiple Sclerosis Association of America. The NMSS just recently recognized our website as a valuable, balanced and accurate resource for people affected by MS seeking information on CCSVI and related treatment. The NMSS now links to our website. Last week the Alliance hosted its inaugural educational event in Boston. The audience included not only patients and caregivers, but a number of medical professionals from Boston Medical Center and national and local representatives from three multiple sclerosis societies.
What type of funding supports the work of the Alliance?
To date our fundraising support has primarily come from individual donors making contributions and events, such as our upcoming “Opening Minds for CCSVI Walk- n-Roll” in March. The first week in March, we hold a two-day educational and fundraising event in Tampa, Florida. Our strategic plan, which is near com- pletion, will include soliciting grants from private and corporate foundations.
What initiatives is the Alliance currently supporting? How are you working with the medical com- munity to advance research and knowledge about CCVSI?
The Alliance has spent its first year building the infrastructure for a professional organization. In 2011 our efforts will focus on fund- raising so that we may offer educational programs to patients and move forward to help establish a multidisciplinary collaboration of medical professionals. MS is a multi-factorial disease, and we need everyone working together to find the answers to the relationship of CCSVI and MS. It is crucial that a patient database or registry be created to begin tracking not only the short-term, but the long-term effects of CCSVI treatment.
How did you become involved in the Alliance? What is your background and how did you, personally, decide to channel your energies into this area?
While in New York to hear Dr. Zamboni speak at NYU, I met with one of the Alliance founders. She asked me to volunteer by creating a database for the Alliance. A month later, I became president. At that time, early 2010, there were not many people who had been treated in the U.S. for CCSVI. We recognized the need for an accurate source of information on CCSVI because, in many instances, patients were being misled on the Internet. I had recently retired as president and CFO of a manufacturing company. I had the extra time and, selfishly, I wanted the research to move forward. I have a brother with MS and a grown daughter with MS. I do not want any of my four grandchildren to be affected by this disabling disease.