The Seattle television program, Evening Magazine, recently featured a local business called FiveHumans. They design, print and sell designer T-shirts to raise awareness of and funds for research into rare diseases. I sent an email several weeks ago asking that they consider designing a shirt for Moyamoya Disease. As you can imagine, since the broadcast,  they've been swamped with requests for support of various causes. I followed up with another email yesterday and a phone call today.
Kim
More to follow...

We have this website which is well publicized and to which a huge number of people visit.  A link from here to the FiveHumans website where folks can purchase the shirt would be one more point in favor of their choosing Moyamoya Disease.

They chose their most recent cause, Noonan's Disease, because over 400 people emailed them requesting that they choose that particular disease. The more of us who visit the FiveHumans website and complete their request form, the better our chances. Bet we can easily surpass that 400 number!

They prefer that there is a non-profit group, a 501 3c, through which they can funnel their donation. If we don't yet have one, I'm willing to make the effort to establish a Moyamoya Foundation - any help with that would be greatly appreciated.

I've offered to sell the shirts in my own retail shop. The shirts would arrive on consignment, I'd then sell them and send the receipts to their company for distribution. Do any of you have retail locations or websites where you could sell the shirts?

Kim
More to follow...

Kim,  had in the past looked into the requirements of establishing a nonprofit 501c corporation for issues relating to socal problems.  I can look into it again, if the support is there.  It seems to me that there were some (business) law students...maybe from colorado (I can't remember-moyamoya strikes again) that were willing to assist.  I also have some professional associates that have started very successful non-profits and can discuss this with them.  However, there needs to be the support.  It's ALOT of work.  You almost need to designate your board of directors, pro tempore, to be in charge of getting this off the ground!  I have several years experience with budgeting (with federal dollars)  and understand direct and indirect cost, etc.  Do we have any accountants on here? Others with professional experience with NPO's etc.  Dr.'s with experience with MMD, lawyers, etc.
  http://www.ncstac.org/content/materials/501c3.pdf
This is a very informative pdf doc. relating to what you are talking about.  Others are also readily available on the internet.  
Once a 501c3 has been established, (Or tenative plans are made for one) then you have to look at what funds to seek under the unbrella of the organization, is it incorporated, etc.  
If the goal is educational, that will set some parameters, etc.  Keep me posted on your progress and indication of support.
what do you propose these t-shirt's say?  If selling t-shirts is the starting point of your fundraising?
(Although I belive fundraising ideas would come "after" establishment of goals, objectives, and timelines for the foundation.)
If you can identify a core group of key stakeholders for this proposed foundation, who are willing to work COLLABORATIVELY, it could be done.  By collaboratively I mean everyone coming to the table brings something:  education (in MM, law, budgets, ovesight, etc), experience (personal or professional) , personal investment (time, research, staff, statistics), financial resources (direct and indirect, monetary and in-kind), investment of time (personal time, staff,etc), etc.    
Perhaps this is much more than you meant...LOL, I can get carried away!

If you are merely talking about selling t-shirts, you could sell them on your own and donate your profit to some other non-profit [ex. non-profit hospital that researches MM and still probably (not a tax lawyer) deduct the income on your taxes as a charitable donation].
At any rate, many NPO's have been created for similar reasons and we would not be re-inventing the wheel here, just needs a time commitment, etc

Keep me posted!!

LOL...I guess I didn't mean to scare you off the idea!  I was just trying to be realistic about what it takes.  The last time I was involved in something like that it took literally 3 days to develop a goal statement!    From there we started coming up with activities (1 day) and took the next 3 board meetings to narrow the actitivies to something we felt we could accomplish (i.e 3-5 activities).  Then you start coming up with a timeline and assigning responsibilites.  When you are done you like to have measurable progess.  This ususally means an evaluation.  Many time you need a preliminary evaluation to see where you are (baseline) before you can hope to measure what you have accomplished.  Much of this is not rocket science, its a time comittment!  I am assuming Nord, etc are also non profits.  It may be possible to set up something with Stanford to establise a separate fund for educaiton and treatment.  It would take a call to their board of directors pehaps to find out.  It would be much easier to "piggyback" efforts with an already existing MPO, and as a contributor, set some parameters for use of the contribution.   
Again, It was not my intention to deter you from advancing this idea!!  What a great cause!  We all know that.      

Hi Michele,
At this time you need to concentrate your efforts on getting your surgery and protecting your health. I need to concentrate my efforts on growing my business as it stagnated during those years that my Moyamoya was running rampant.
I don't want to take on more than I can realistically handle. I know that the creation of a non-profit is more than I can handle at this time. There will one day be a Moyamoya Foundation, but it is beyond me at the moment and you need to get yourself healthy first.
I am able to create and market products through my business and send the profit to Stanford University's 501c3 where it will be directed to funding Dr. Steinberg's Moyamoya research. I don't expect to generate tons of cash, but I think that if each of us does what we can it will make a difference. DJ has offered to help market the new moyamoya products through this website. That will help tremendously - thanks DJ!
I have another idea for a product that most of us can use. The topic of medical alert bracelets and adopting a color for moyamoya awareness has been discussed a number of times here. How about our own unique, personally engraved, beautiful, beaded bracelet? Most of us are buying one anyways, so why not spend the money for one that will benefit moyamoya research. Betcha I know of a couple of artistic ladies right here who could design something really special. I'd much prefer to wear a colorful, beaded bracelet than the ugly silver one I now have. Could probably design one that would appeal to guys as well. If it is a gorgeous piece of art wrapped around the wrist, other folks might comment on it and give the wearer an opportunity to tell them about Moyamoya - one more way to generate awareness. They could also be sold to folks who want to support our cause, but who don't have the disease.
What do you think? Please share your product ideas.
Kim

That is a great idea KIm..the bracelets.  If they were made of beads, there could be a charm or something similar.  I heard someone say on there ID bracelt it says on the back the date of surgery, type, bilateral or unilateral,  etc.  I thought that was also a wonderful idea!  My daughert has made quite a few macrame hemp necklaces with beads on them.  That would probably be similar to having a locket w/ infomation in it  A person could take something like this to any local jeweler and get it engraved. Unless we ould get a jeweler to donate these services and provide them custom.  The options are really limitless... jewelry to celebrate a MM surgery anniversary,etc.  ALso, if we could lobby the powers that be, we could maybe get a day designated (if there isn't already) to rare disease education.  That would be a good time to hit up local media about some public service education messages.  Just some thoughts!  I have to take em when I get em..LOL
God Bless You All
Michele