Moyamoya.com Forum
http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl
Moyamoya Related Topics >> Moyamoya Related Information and Support >> National Moyamoya Day
http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1350757362

Message started by gotchlorine on Oct 20th, 2012 at 2:22pm

Title: National Moyamoya Day
Post by gotchlorine on Oct 20th, 2012 at 2:22pm
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.

Title: Re: National Moyamoya Day
Post by mg12061 on Oct 20th, 2012 at 5:34pm
  Sounds like a great idea and the date sounds great. I'm not sure if you've looked into how to go about this but here's a link I found. I didn't have time to read through it yet but it looked like it explained how to go about this.
http://healthfinder.gov/nho/faq.aspx#4
Mary Grace

Title: Re: National Moyamoya Day
Post by Amit on Oct 27th, 2012 at 11:14pm
this sounds like a great idea! how do we take this forward  ?

Title: Re: National Moyamoya Day
Post by gotchlorine on Nov 5th, 2012 at 10:48pm
Unfortunately, the most that we can (really) do (currently) is to start recognizing May 6th (5/6) as "Moyamoya Day" (at least amongst those of us who at the moment are aware/knowledgeable about the disease). It's a rather long/lengthy/timely process to get a specific day to be recognized as a "National Day". My mom & I have previously designed/made t-shirts for Breast Cancer awareness/support, so we're working on designing something for a "Moyamoya Day" that will address 1) raising awareness, 2) recognizing 5/6 as the day (since everyone has been in favor of this day so far on this site, & on other sites), and 3) that will be impartial to anyone in particular’s surgery date, doctor or institution.

-Tara

Title: Re: National Moyamoya Day
Post by srkm5482 on Nov 18th, 2012 at 9:09pm
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

Title: Re: National Moyamoya Day
Post by LA on Nov 21st, 2012 at 1:18am
I love the idea and Thank you Tara for all your work. You are doing such a great job of keeping MM in the foreground ~ and with your life. Thanks for inspiring....

Title: Re: National Moyamoya Day
Post by CJ Reilly on Jan 25th, 2013 at 12:27pm
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!  :D

Title: Re: National Moyamoya Day
Post by mattsmom on Feb 5th, 2013 at 4:22pm
I believe that May is also Stroke  Awareness month -- so that sounds like a great time of year. Asking to have one day out of the month for just one reason for strokes makes perfect sense to me.

Kimber

Title: Re: National Moyamoya Day
Post by eirelynsmom on Feb 11th, 2013 at 12:03am
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

Title: Re: National Moyamoya Day
Post by srkm5482 on Feb 26th, 2013 at 8:52pm
You can buy MM wristbands here at the MM store (DJ has a link) for only $1.00 each.  The wristbands sold at our office for fundraising are sold at $10 ea.
Unfortunately, my office mgr tho't we already have enough fundraising for diseases at the office so I got turned down!  >:( I haven't given up, though - I'd really like to raise some funds (and awareness) of MM & the genetic research.  just going to have to find another way........... ;)

Title: Re: National Moyamoya Day
Post by gotchlorine on Feb 28th, 2013 at 11:39pm
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

Moyamoya.com Forum » Powered by YaBB 2.4!
YaBB © 2000-2009. All Rights Reserved.