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!

To The Pink Door! June 27, 2010

Please join me in Seattle at The Pink Door on June 27th. Can't attend? You can help by sharing this video with others, or sending a donation. Also, I'm 'matchmaking'! Contact me to sponsor someone if you can't attend, or to be sponsored if you're in Seattle.

To reach me privately about matchmaking, please click here to send me a private Facebook message.

Sunday, June 6, 2010

The waiting place

One of my favorite books is 'Oh, the Places You'll Go' by Dr. Seuss.

My friend Dorothy gave me this book before I left on an adventurous trip to New Zealand back in '93.

What a fun book. Oh, the places I've gone... and the places I've yet to see... The book has advice for life's ups and downs.

It's that book title that inspired the name of my blog.

The path of testing and treatment for CCSVI has and will take me to many places, both literally and figuratively.

Right now, I find myself in

'The Waiting Place...

...for people just waiting.
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or the waiting around for a Yes or No...'
It goes on, and here's what I'm really waiting for:

'Somehow you'll escape
all that waiting and staying
You'll find the bright places
where Boom Bands are playing.'

--Dr. Seuss, 'Oh, the Places You'll Go'

Yes, the place that the Boom Bands are playing. That, in my mind, is what I'll hear after treatment for CCSVI. Certainly the Boom Bands play when one is liberated, right? Or so I hope.

And yet, I'm in the Waiting Place both by geography and choice.

I want to be treated for CCSVI locally. No one, that I'm aware of, is treating locally. I'm in touch with a few doctors and am hoping someone will start treating here soon.

Then there's the part of me that is waiting by choice. I have many fears. Re-stenosis. Stents. Clots. Getting worse. There are so many people feeling better after having their veins open. However, this is still an experimental treatment, and I'm having to figure out just how much of a risk taker I am. Where is my comfort level? What's going on with my MS? How long can I wait? Where am I emotionally? What can I handle? What am I willing to put my friends and loved ones through? There are so many questions in the waiting place.

I've been mulling this over for days and trying to figure out how to put it in words.

I've learned to follow my gut instinct. While my emotions may try to take over, I need to balance them with the logical side of me that does the 'pros and cons' analysis.

I had an email from Euromedic the other day - Dr. Simka's group in Poland. I had sent an email months ago. They still had me on the list, and were wondering if I was still interested. I didn't hesitate in my reply. 'Please remove me from your list. I'm waiting for a treatment option that is closer to home.' I'm on other lists, but they're not close to home either. I'll have to wait as my name comes up to see how I feel.

So, I wait... and I'll know when the time is right for me.

To all of you pioneers who have been treated both here and abroad, a heartfelt thank you for pushing ahead and helping to figure this out. I do believe that this will be a big discovery in the disease that we know today as MS.

And, I do believe, that one day I'll hear the 'Boom Bands' that mean liberation and hopefully a loosening of the grip that MS has on me... when the time is right for me.

Wednesday, June 2, 2010

Fundraising for CCSVI

I fully support what Buffalo Neuroimaging Analysis Center (BNAC) is doing to research CCSVI. By participating in their self-pay CCSVI Database Study, I helped them with their research in several ways. I added data to their growing set of CCSVI data to help make the correlation between vein issues and MS. In addition, a small amount of my fee will go towards helping them continue their research. I've also donated to one MStery Party, and will be attending another.

The best way I can help now (I don't have unlimited funds!) is to continue to spread the word about what BNAC is doing, and how you can help them financially. Their total study cost is $5 million. Hopefully they will get funds from some big donors.

In the meantime, they are asking individuals to help by holding MStery parties. This can be a party held at a restaurant or park, or it can be a virtual party. If an individual party raises more than $1,000 there is a matching grant of $1,000 from the Direct-MS Foundation (Ashton Embry's organization). Check here for more information about hosting a MStery party: BNAC MStery party.

Here are a few of the MStery parties I'm aware of:

Jill and Larry Nolan are hosting a MStery party potluck picnic in Edwardsville, IL on June 13, 2010. If you're in the greater St. Louis area, please consider attending. If you can't attend, please consider making a donation and be a 'virtual' partygoer: Jill and Larry's party. Follow the instructions for online donations.

Jackie Roberts is hosting a MStery party, called 'Festa per la Salute' (Party for Health) at The Pink Door in Seattle on June 27, 2010. The cost is $100 per ticket, and 70% of the ticket price will be donated to BNAC. In addition, participants can make a tax-deductible donation directy to BNAC at the party. For more information: Jackie's Pink Door Party.

Flowers 4 MS is supporting BNAC in a big way. Angela has raised, at last count, over $6,000 for BNAC. I ordered a t-shirt and cards from her recently, and am impressed with her fundraising efforts. She is an amazing woman, and has some great Italian to English translations of important CCSVI documents out of Italy on her Flowers 4 MS Facebook page.. Back to the fundraising: if you'd like to support Flowers 4 MS and BNAC, here is her site where you can order beautiful greeting cards, t-shirts and other items: Flowers 4 MS.

Stay tuned for more posts. I'll be expanding my site by adding a few pages (for example see the 'honeybees' placeholder at the top...) and will have a page that is dedicated to fundraising.

Thanks for your support!