Saturday, June 19, 2010

To the post office!

Today has been quite a day of mixed emotions. I've heard that Barb Farrell will receive treatment in the U.S. on Wednesday. THAT made my day. I had a wonderful private response to my Pink Door video from someone involved in fundraising for MS and CCSVI research. THAT made my day. I've helped match up people with sponsors to attend the Pink Door party. That's awesome.

However, I'm also frustrated. There's a bit of a story behind it, and I need you to know the background.

In January 2010 I embarked on a letter writing campaign. I took the advice of many (especially Joan) to "go local" and bring the CCSVI research and information to local doctors who could help - Interventional Radiologists and Vascular Surgeons. I wrote a 2 page letter. I looked up about 20 doctors. I printed the letters and mailed them. In total, I heard back from about 6 doctors. Two of them actually called me! Not all were interested in acting right away. There is one doctor that I've had contact with via email since he replied to my letter in February. I shared new research, we discussed insurance. I emailed him about Dr. Dake's presentation in FL back in March, and he emailed that he was there in person to hear him! He emailed recently looking for an update on me. That email arrived while I was in Buffalo for testing at BNAC. I've since sent him my test results.

I sent him an email to let him know the tests were in the mail, and asked a few "while we're waiting" questions. One of these was:

"How many MS patients have you heard from about CCSVI"?
Can you guess what his answer was? I mean, c'mon. I'm in the Seattle area where the incidence of MS is high. I'm thinking "he's heard from a lot of people." His response:

Five? Am I really only one of five people in this area interested in CCSVI research? I find that really hard to believe... *sigh* That is the source of the frustration today.

When we heard about Barb Farrell, we all asked "What can we do?" and we emailed and sent letters.

I have a request for a new letter writing campaign.

For now, just for today, skip the neurologists. Skip the celebrities. Forget about your primary care doc. Just ignore them for a moment.

If you're in the U.S. and you haven't written letters to vascular doctors in your area, please do! Here are a few easy steps that you can take to help spread the word about CCSVI and to encourage a local treatment option for YOU!
  • Use the internet to find local Interventional Radiologists and Vascular Surgeons in your area (see below for a link). You are looking for doctors who perform balloon angioplasty, also known as an "endovascular" procedure.
  • Write a brief, heartfelt letter in your own words
  • Print the letters and sign them
  • Mail the letters in a hand-addressed envelope
  • Post here or on TIMS or on Facebook to let me know that you've done this. Be number 6! :-)
See how easy that is? It doesn't sound like that big of a deal, right? It's really not. But it will take some time. Maybe a few hours. It will be worth it! Think of Joan getting the research to Dr. Dake. Think of 'bestadmom' from TIMS getting the research to Dr. Sclafani. Did you hear Dr. Sclafani's speech from Italy? He is involved in this because he got a letter from 'bestadmom.' He was about to retire, and now he is working on CCSVI for us. Because of one person. That person could be you for a doctor in your area. "Why me?" you ask? "Why not you?" I ask.

Please help us spread the word to doctors who can help us. And if you think "Well, someone probably already did this..." please don't let that stop you. The more letters, the merrier. The more letters, the higher the impact.

Am I done yet? Not yet... Here are a few more hints on what worked for me. If you're wanting to send letters and thinking "I don't know where to start," here are a few tips:
  • In my letter, I included my personal contact info: Email, phone, mailing address.
  • I included a very brief statement about what CCSVI is.
  • I included one or two websites. I included Dr. Haacke's site. If I were writing the letters now, I would also include theVenous Multiple Sclerosis site which has an excellent list of published research. (See my links at the top of this page if you need web addresses for these.)
  • I was upfront about the fact that I have MS, and am looking for relief from symptoms. I was clear that I knew that this wasn't a cure.
  • I was clear about what I was asking for. I was asking for testing and treatment.
  • I offered to send more information if they didn't know about CCSVI. I did not include copies of research, as I didn't want to send it if they already knew about it.
  • I included the 'big names' who were involved at the time - Dake, Simka, Zamboni, Haacke, etc. There are now more. Include the new doctors - Siskin, Sinan, Sclafani, etc.
  • I mentioned a brief summary of the research that was going on.
  • I mentioned that patients were anecdotally reporting great improvements, and that Zamboni's research indicated quality of life improvements.
I found the doctors names using several methods:

  • Society of Interventional Radiologists website Use the Doctor Finder on the left. Choose your state, and then choose "Angioplasty" as the specialty. Here's a hint on these names. I cross checked them. Some of the addresses were not correct. Some of the doctors had changed hospitals. Google their names, and search out their websites. Verify the address.
  • Be sure to look up the IRs and VSs at the big hospitals and univeristy hospitals in your area. Note that not all Vascular Surgeons perform endovascular procedures, which is what we need. IRs do... that is all they do! Before you send a letter to a VS, check out the info. A lot of hospitals and clinics have detailed information about each doctor.
  • Don't forget the private clinics. The physician owned, physician run clinics. Think of Siskin at Community Care in Albany...

I'll leave you with one final note. Please write your own letter. It should sound like you. You should know the research. You should know the terminology. Why? Because if you write these letters, a doctor just might call you. Be able to "talk the talk" when they call. I encourage you to write a letter that is so compelling that they can't help but call you. And when that happens, please let me know!

Now - off to the Post Office with you!


  1. Great idea and info.. I will do this! Thank you for all that you do to help spread the word!
    ~ Tarah

  2. I sent out packages (with the info Joan initially suggested) to 15 vascular surgeons/interventional radiologists nearest me (Vancouver Island and Lower Mainland of BC). I received only one initial response and I'm still communicating with that Doctor. I received a joint letter from three other doctors 2 months later stating that they were unable to help (along with the usual "not enough evidence" comments -- but then this IS Canada!)

  3. Tarah - great! Let me know how it goes.

    Anonymous - I'm glad to hear that you sent out letters, and that you're still in touch with one of the doctors. I think this ongoing contact is so important! Nice work!

  4. GREAT ideas! I WILL do this in San Antonio, Texas!!!

  5. Shammy - Great! Be sure to let me know how it goes.

  6. Thank you! Somewhere to start.