Hi everyone. We recently lost a dear friend who had moya moya and died of complications of stroke. We all want to have a fund raiser in her honor to raise money and honor her memory, but the problem is, I am not sure where we would contribute the money we raise. Ideally, we'd like to contribute to research and early detection of moya moya, but I've been unable to find an address or website of a foundation (it may not exist).

If anyone can help me with some information, I would greatly appreciate it. Thank you!

Stanford does some amazing studies on moyamoya. Some have to do with stem cells, another has to do with genetics and another with the make up of the actual vessels. To my knowledge there is not a national foundation for Moyamoya. I am sorry for your loss and appreciate your desire to make a difference in the life of other moyamoya patients. Let me know if there is anything I can do to help.

Reagan

Hi dcg,
I am so very, very sorry to learn of the loss of your friend. I so hate this damned disease. I have it and pray that I will not be one of it's victims - I' doing all I can to prevent that. I returned this evening from Stanford where I attended the first International Symposium for Moyamoya. Dr. Gary Steinberg spoke about how difficult it is to get funding from traditional sources for research into a disease as rare as Moyamoya. They are doing amazing research there, but are always short of funds. He hopes more funding will become available as awareness of the disease increases - one of the reasons behind the conference. You can donate to Stanford Medical Center and stipulate on your check that the funds be used for Dr. Steinberg's Moyamoya research. The medical Center is a 5013c so your donation will be tax deductible. A call to Stanford Medical Center will get you the address where you can mail your check. There is also amazing research being done by Dr. Michael Scott's team at Boston Children's Hospital. I learned yesterday that they have found proteins that can be found by a simple urine test that are indicative of Moyamoya Disease. Your contributions would be very appreciated and well used by both of these amazing researchers.
Kim

Tracie,

I agree...Where do we start and how do we make a difference?

Reagan

OK, I will chime in, Myself, Julie (Roberts Mom) Dave & Maria (Noahs Parents) have talked about this in depth. Noah and Robert had surgery together and 6 month check ups together.

I am now in a position where I can head  a 501c3  up come fall.

I Have started a 501c3 before (fire department)

If we were to do this I feel the following.....
the primary mission should be

A) to provide for or otherwise support the financial end of the costs associated with travel for the treatment of moyamoya, for the immedate family and Diagnossiee.

B) to provide for or otherwise support the financial end of a support group for mayomoya families( ie Moyamoya.com)

C) to provide a advocate in every State to argue for insurance coverage for the insured, underinsured or un-insured for coverage.
also to provide support in every state for Families traveling out of their home state for treatment in regards to Moyamoya( someone to meet them and greet them tell them how to get from point A to point

D) to provide financial assistance into research and State and Federal  insurance laws to make it easier for Moyamoya familiues to receive treatmenty.

So here is what I am saying,

A) When Robert needed his surgeries, I was blessed in the fact that our community of 1000 raised oiver 20,000 dollars to cover the travel expenses,  I grew up in a big city ( over a million population and didnt see that too often), This may be done not only in dollars but also in discounts from Major chains IE TWA, Hertz, Ramada INN

B) as this is a Rare disease we all need the support of each other, I found this site when Robert was dianoised and his Dr. referred us to it. Also I think the Picnic (which we happened to be able to attend) and the reunion ( which we have not been to) are all huge in the " peace of Mind" and "Family sticking together" mentality that makes this bearable

C) (this Dave and I talked about) Dave is from San Diego, I am from Michigan,  Dave & Maria choose to have treatment  for Noah in state, We chose to go out of state for Roberts Treatment, Noah had insurance, Robert didnt, It took close to four months of arguing with the state to get him( Robert)approved for out of state treatment. We then had 4 days to plan a 30 day stay across country.

    I know I am not the only one with the experience to "Fight City Hall" if we could get someone to explain to people within their state how to "get r done" and take the burden off the parents that would be huge. Be it Private or State insurance I am willing to bet we               (moyamoya families are well represnted and have had that fight). Also it should not matter where we decide to go. I mean to say this I fought to go to Stanford (that may not be the right choice for every one) (Jill (gotchlorine) may disagree....but i still love her Cambell , and Tara) Consequently we need to show ZERO preduice in regards to where people go for treatment ( what ever is best for their Certain circumstances). However, if someone decides to go out of state, we need to have a support group(or Person waiting for them at the Airport) Make no mistake about it, Jill Tara, Cambell, Treasea , Matt Fong's Family,  and even oneelse made it all tolerable once we got to the Hospital. It would have however been nice to have a Freindly face meet us at a unknown Airport in a previously unvisited state to show us the way around.

D) Their are avenues for the Hospitals to get funding for research, It takes a little bit more to make a State goverment understand that this treatment is needed,  but it is still possible with the right people in your coner, that why this is the last concern. I mean to say this, the Treatment is already out there we need to fight for it, it takes zero money and alot of voice for the State Goverment to listen to us as Individuals howeve, as a whole we can chant ovcer and over what is important to us.


All that being said, I will pay the 500 dollars filing fee for the 501c3 I would need people interested in being officers, I know I am and Dave would be as well, We would also need members in as many as states as possible, ( one of the requirements is show how you grow) . I think we could not only raise dollars but also negoiate deals with many of the travel business to give Famieles traveling for Treatment a major discount. and also Memebrs of FOMMP (Freinds of Moyamoya Patients) a minor Discount for Travel for Receration and or Support


If you want to discuss this feel free to  PM me here or my Private Email is pettmj@hotmail.com

I am so excited by this thread!! Last summer I actually attempted to start a 501c3 but it fell through because I honestly had no clue what I was doing, didn't have enough help, and the Moyamoya took over my life again.

I want in on starting a National Moyamoya Foundation and I think that starting community walks would be a great idea. My question is, lt's say I do start a walk and get sponsors and money starts to come in, where does the money go? Do we need to start a 501c3 before organizing a walk or do we need the money as a startup? And if we do need the money as a start-up are the donations still considered tax deductable? I know it would be hard to get businesses to sponsor a walk if it wasn't.

Like I said, I am eager and willing to help see this through if we can just get the ball rolling. I can't wait to see where this goes!!!

Jesenia

Tracie, I am also in the eastern time zone. Anytime should be ok with me, actually, the later the better (don't sleep well). I am going to go ahead and see how many people I can get to help me organize some sort of community fundraiser.

I am eastern, and available after 3pm est for a disussion, barring any Ambualnce or Fire calls. However i need a couple weeks to tie up a loose ends on a grant I am working on.

Jill,  I would like to have Campbell at this discussion as well. Also would he consider being on the Board.

Mike

Good Afternoon/Evening to All,

If everyone wants to give me a couple of dates that work for them to log into the Chat room to discuss the development of a National Moyamoya Foundation I will set things up. 

Mike,  I know that you have a lot going on right now so we will try to wait a couple of weeks before we all talk.

Let's shoot for sometime after the 4th of July if that works for everyone. 

Evening is most likely the best, since many of us work.  For those on the west coast what is the earliest that you can log on?  Since there is a 3 hour difference between the east coast and west coast we may need to do this later in the evening for east coasters.  Can the west coasters log on around 5pm your time? 
That would make it 8pm on the east coast, I didn't want it to get too late.  If we need to do this at 6pm pacific time, 9pm eastern that works for me.  Let me know what is best for everyone. 

We can also do this on a Saturday or Sunday if that works.  Try to look at dates between July 6th and July 13th.  This will just be a preliminary discussion of what everyone would like to see happen with this endeavor and to outline some basic plans and ideas. 

Thanks everyone and I look forward to hearing from you all soon. 

Tracie

Good job, Tracie. Saturday, July 11th at 5:00 Pacific Time, 8:00 Eastern Time would work well for me. I'd have time to shoo customers out the door and close shop.

Do you have a format for the first discussion? There will be a lot to address and it may be a good idea to limit it to a few key items. Maybe why there's a need for a foundation (Mike's stated that very well, I think), what it's goals should be, how to prioritize those goals, how it should be organized (national, state or both), if both national and state, how are they coordinated, what kinds of skills are needed on the board of directors, how many board members are needed, who are the members, do the members elect the board, is there a membership fee to help raise funds, how are funds raised, how are funds distributed ...

Where do we start?
Kim

OK everyone as much fun as this can be, It can also be a headache if it grows to big too fast, for that reason I think we should take this conversations "quiet"  I have been pming Tracie quite a bit and by nomeans want to step on any ones toes If you have posted on this thread  prior to this message. Please email me with your email adress and we will start doing this as a group rather then a open disussion for all to see and comment on,

I say this not to imply it will be a secret society but if we contiue tohave this open discussion we could potentialy argue for a month over something as simple as wether or not  we use the 24 hour clock or the 12 hour clock

The 11th dosenot work for me, I will be instructing a 8 hour class on Emergency Vehicle operation to a class of 50  after that I not sure were the after class meeting will be but I am sure beer will be envolved...........How about Sunday the 12th?????

I am sure you can tell by the time of my posts I am usally up late


my Email is pettmj@hotmail.com

Mike

HI,

This is a great idea.  I live in Louisiana and would love to be involved in whatever way possible.  I don't have any special talents, however, I was involved in starting a State Associaton for Home Child Care Providers in Texas many years ago, so I have a little information.  Let me know how I can help.  I would love to be in on such an important endeaver.

Margaret

disneygirl wrote on Jun 19^th, 2009 at 10:09am:

Does this mean you will not be posting the date and time of the discussion when you decide??