Hey everyone!

After seeing other people’s posts on other sites, I got to thinking about a special day for moyamoya disease and did some quick research. Here’s my thought process:

The earliest documentation describing a moyamoya-like condition (without it being formally named) was in the late 1950’s.

Moyamoya was named in the early 1960’s.

Dropping the numbers 1, 9, and the zeroes, leaves the numbers 5 and 6.

How about May 6th (5/6) as national moyamoya day? It’s impartial to anyone in particular’s surgery date, doctor or institution.

It'll likely take awhile for it to become a "national day", but if those of us amongst the moyamoya community start to recognize a specific day as "moyamoya day", I'm guessing that it'll likely be easier (in the future) for it to become a "national day".

I’m open to other suggestions, but thought I’d throw in my two cents.  Having a "moyamoya day" (hopefully to become "national moyamoya day" in the future) would certainly assist in raising awareness for the disease.

Thoughts?


Much love,
Tara M.

this sounds like a great idea! how do we take this forward  ?

GREAT idea, Tara!
I have been checking with my company to get permission to raise funds for the genetic research going on here at UT Health/Sci Ctr by selling wristbands at work. Other employees have been selling them for $10 each for things like Pancreatic Cancer, Breast Cancer, etc. and if we buy one, our Ofc Gen. Mgr. lets us wear jeans the last work day of each week that month (when you wear the wristband)!
So I could put the date & National Moyamoya Awareness Day on the wristband (if they allow me to do this and I think they will) and hopefully be able to do it before May next year.
Maybe others could check with their companies about doing something similar.
sue

This is so awesome!  Have the wristbands been made yet and where can we get them?! 

I am sure I can get LOTS of people to buy them and wear them!  And this will be a great way to lead up to the big May 6th Moyamoya Day roll-out! 

I think it is a great idea!  My ex-husband is an excellent artist and designs many things for USF here in Tampa as well as for the Walk for Diabetes,etc..  I could ask him to design something for this, just need to give him some ideas of what we are looking for.  I have a real personal passion to see some changes made (feel like I need to go to my states capital and have a heart-to-heart with the guys helping to run the healthcare show). I had posted on here a lot last year looking for answers and help for my husband who at age 36 and after 2 years of our marriage was diagnosed with moyamoya after he had 5 strokes in 2months. He had ECIC bypass first in August 2011 which failed, and then I took him to Steinberg who did an indirect bypass in January of 2012. I am very sad to say that my husband passed away on September 24, 2012 right before our 3rd anniversary. The last few months of his life he was so depressed and his behaviors/moods were all over the place (the strokes always hit the left temporal lobe). I had found him on Sep 15 unconscious and after a week in ICU, I had him removed from life support and we went to Hospice where he passed away 5 days later.  The death certificate reads "death caused by cerebralvascular disease".  I never thought this "rare, progressive disease"would take his life...or at least end it so quickly.  Matthew left behind a 2 year old little boy we had in August 2010 who is disabled (most likely either same disease as Matt, or Deacon had a blood clot that formed in brain in utero which left him missing sections of left side of brain and the small center). I have a very deep desire to help make changes for people who are suffering from a disease that every physician we saw locally ALWAYS had to google what it was etc..

So, let me know what I can do.   

Shari

Hi Everyone,

I don't know if you saw the message I posted earlier today on a thread of its own, but I wanted to make everyone aware that there is now a "World Moyamoya Day" facebook page. If anyone is interested in joining it, here is the link:

http://www.facebook.com/emcatmeow#!/groups/145861575578487/

My best to ALL of you!

Sincerely, Tara