from my blog: www.myliberationadventure.blogspot.com:



Last week I made the case for why my blog was really just about me. I said that I would leave it to others to inform and educate. Well, I’m going to eat those words today.



On Friday I had a wonderful lunch with Carol and Scott Schumacher. Carol is a CCSVI friend who was in town to be retreated by Dr. Haskal. She might have just been another lucky patient of his, but after she and two friends were treated by the good doctor in July, they went home to San Francisco and made some noise! They formed a group called the MSketeers, got themselves interviewed on the local news, and began planning ways to move CCSVI research forward. They held a fundraiser in August to support Dr. Michael Dake’s upcoming clinical trial for CCSVI at Stanford, and raised an impressive $30,000! Dr. Dake attended the event and spoke to the crowd.



These MSketeers are a passionate group of individuals with connections running deep and wide in organizations that have big bucks to hopefully help fund the multi-million dollar studies that will be needed to definitively answer the CCSVI questions.



I am flattered to have been asked to be an honorary member of their group, and to help them on the ground here on the East Coast.



I am going to sound very naive right now, but this is the first time in my relatively sheltered life that I see a medical condition that needs to recruit doctors to study it, as well as money to fund those studies. I know that there are too many orphan diseases who have an even tougher fight than we do. Because of the close to 100% correlation of CCSVI and MS, we have a built in patient population of close to 500,000 in the US alone. There is power in numbers, and for better or worse, we've got 'em.



A newly identified disease like CCSVI has a long, steep climb ahead of it. I think that many strong, motivated patients have done a remarkable job of piquing the interest of interventional radiologists, and a few brave neurologists (my own Dr. Tornatore, among them). CCSVI is now represented at their educational meetings all over the US, and the world.



Now we have to help them find money to fund the studies that will ultimately support or refute this fascinating theory. The usual suspects in funding medical research, the drug companies, have nothing to gain, and possibly much to lose, from CCSVI research. If stents are shown to play a significant role in this treatment, their manufacturers would be an obvious matche for CCSVI researchers.



It is truly unfortunate that our most obvious source for financial and informational support, the National MS Society, is not really stepping up to the plate. They and the MS Society of Canada have committed $2.4 million dollars to study testing for CCSVI, but not one clinical trial of the actual angioplasty treatment. And in the real world of medical studies, $2.4 million spread across multiple studies is chump change, and they know it.



I like and greatly respect the people who work for my local National Capital Chapter of the Society. They are a wonderful resource for our community. They aren’t the decision makers or villains. They are just hard working folk who are committed to supporting our needs with educational programs, stipends for things like child care, and referrals for just about anything! Perhaps the problem is that they are able to offer so much because they have great financial support from the pharmaceutical companies who make drugs for MS. I don’t believe for a minute that the hundreds, and even thousands of dollars that individuals raise at the annual MS Walks cover the yearly nut to run this national organization. Hmmm… A major conflict of interest for an organization whose stated goal is to CURE MS, but who is financially beholden to drug companies who are vested in keeping us forever hooked on their wares to the tune of over $6 billion a year!



So for now it is up to individuals, and groups like the MSketeers and CCSVI Alliance, to help our doctors find money to study our disease. Luckily CCSVI treatment has given this one patient the energy I need to actually do what needs to be done! And I am not alone. The ranks of successfully treated patients are growing daily, and the doctors who are treating us are learning more and more with each angioplasty that they perform.



I sincerely believe that one day CCSVI will be an easily diagnosed and treatable condition. Perhaps we will learn that with adequate intake of vitamin D during pregnancy, CCSVI could even be prevented from ever developing! Now we just need doctors with money to study these questions. JUST. Ha!



We're working on it! We're working on it!



LATE BREAKING NEWS: Lest you worry that this blog has lost its focus, I have some great news about ME! I just agreed to take my 13 year old to the Verizon Center in DC to see the Glee concert in June. I have always been wary of making plans too far in the future. It is an MS curse. But with my CCSVI under control, and Dr. H. on my team if I need him, I made this commitment that I have every confidence I will be able to keep. We are going with a few other moms and daughters, so I will have help if I need it. But I think that my cane and I will do a damn good job all by ourselves! I can't believe that I am actually able to contemplate doing something like this without "Rock Star" (a.k.a. handicapped) seating, and without using special Nicole-moving equipment either.



Blessings counted? Check!