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!

Hi dcg,  I am sorry to hear about your friend. I was diagnosed with mm in 2002. I have no idea if there is a foundation but when I had my last TIA last March I volunteered participate in a five year study at the University of Iowa and Washington University St.Louis to find out why mm is being found in younger women. They are doing research and trying to detect onset of mm. I don't know if this will help but just know that my prayers are with you and your friend and family.

SHARON

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

dcg,

I’m so sorry for your loss. It breaks our hearts when we lose a MM family member. Our thoughts and prayers are with your dear friend, her family and friends. Like Reagan said, I too appreciate and admire your desire to help future MM patients. God love ya’s! Unfortunately there isn’t a MM foundation as of yet that I’m aware of or a specific MM research program where we as a MM family can donate to such a cause, or we would, so what we do here as a MM family, is donate to moyamoya.com. This is all we’ve had. DJ and this website has saved countless lives since January of 2003, when there was nothing at all on the World Wide Web about this rare monster of a disease. I know for a fact he saved my niece’s life. DJ bought and maintained this website entirely on his own, out of his own pocket for years, up until he got married and had another family to provide for, and only then would he accept any donations at all to help him maintain it. DJ spent countless hours researching moyamoya and still continues to do so. He provides a place to come for support, updated and recent information and hope and friendship to anyone who needs it. Many will attest to this, this is not just my opinion. So if you were to ask me where a good place was to contribute to, in honor of your friends memory, I would have to say it would be right here at moyamoya.com, where it will help to continue to save lives and help so many others in the future.

I don’t want to take away from Reagan’s suggestion. She’s absolutely correct about the outstanding research Stanford is doing for stroke and MMD and they’re one of the largest MM centers in the world. Here is just one recent article on a study that I think is amazing: http://www.reuters.com/article/healthNews/idUSN1960584920080220
I’m sure if you contact Stanford, they could give you the proper information to help you, should you want to go that route.

Another thought--It would be so nice if you could send a picture of your friend to DJ so he can post it here in loving memory.

Good Luck in your efforts. We're here if you need us to help in any way. [smiley=hug.gif]

Mar

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

Currently there is not a MoyaMoya Foundation to provide support to patients and families affected by this disease.  I feel that there should be.  I have read countless stories on this message board of people who were diagnosed and did not have any resources for treatment.  Raising money for research is very important, but in the interim we need to focus on providing not only emotional support but also finacial support to other MMers.  Many people do not have insurance or even a job.  Many people are unable to work because of the effects of a stroke.  What is being done to help those individuals?  Not everyone qualifies for government assistance programs.  If anyone else is interested in working on a program that could help other families with the fiancial burdens of this disease please le me know.  
I was very lucky and was blessed with a great job and wonderful health insurance.  Not everyone is as luchy as I was.  We have resoruces for emotional and moral support, treatment, education, and research, now we need to focus on finacial support for those affected by MM.  

Tracie,

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

Reagan

Reagan,

I have been working on this idea ever since I was diagnosed with MM in March.  I had my surgeries in April, since then I have done some investigating.  We need to get not for profit status from the federal goverment.  Most importantly we have to raise money to start the foundation.  I have been talking to some of the other MMer's and would like to organize a national "moyamoya walk for awarness."  During this event MM patients and families would set up a date to walk through their home towns and would get community members, buisnesses, friends, and family to sponsor them during the walk.  On the walk we would raise awarness about MM.  I am working on an event in my community that will take place on a Saturday, we would start early in the morning with registration, coffee, water etc...  I am hoping to be able to sell Kim's t-shirts for people to wear.  We will walk a designated distance throughout the day either as individuals or in relay teams.  At the end off the day (6:00pm) there will be a concert in the park (which will be a completion site for the walk)  I have 2 groups that are willing to perform for me.  I am hoping that I can get a couple of local vendors to set up food and drink stands with the understanding that half of their profits will go to the foundation.  If MMer's all over the nation did an annual event like this in their community we couls raise a lot of money.  I think the events need to be around the same time of year throughout the nation.  Since there are so few of us with this desease this event cold be done at a state level, each state would set up and event like this each year.  All the MM families and patients could help with the event.  

Secondly I would like to develope a web site for people to donate.  We could also sell items on that web site that would benefit MM patients and their families.  I think Kim is already working on this.

The hard part is determining who gets the financial help.  MM patients and their families can apply for assistance and it would be based on greatest need, finacial status, and if they had health insurance.  

There are a great number of details to work out but I think it is very doable and very neccessary.  As time progesses the foundation could also assist with fund rasing for research.  I know that many are hoping for a cure for this horible disease very soon.  I also hope for a cure as soon as possible, but I do not anticipate one any time real soon.  I am a nurse and I have spent the past 20 years working in health care.  Cure's for diseases like this are not that easy to find, it could take years.  Therefore, in the meantime I think we need to help those that are less fortunate.  MM is very treatable, but expensive and if there were an organization that could help releave some of the finacial burden from patients and families what a stress relief that would be.  I welcome any ideas and input from anyone.  

Tracie

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

This is a fantastic discussion, and kudos to those of you who are pursuing it.  Those who know me and my family, know that we’ve always had a “soft spot” for patients and families who are going through the diagnosis and treatment stages of Moyamoya.  The road is difficult enough, without adding on the hindrances of insurance and/or financial issues.

If there is a way for me to be involved with a foundation, I would love it.  Who knows - there may be a day when I’m not employed by Stanford (and obviously without the perceived conflict of interest) and can take on a more participatory role.  Campbell, who has just one more year of law school, has always planned to use his legal education and experience specifically to help Moyamoya families weed through and fight insurance issues.  His offer of pro-bono legal counsel would hopefully be of use alongside the endeavors of a foundation.  For good or for bad though, we’re a year out from him taking the bar.  Additionally, once done with nursing school, one of Tara’s main goals is to increase Moyamoya awareness through her open water swims.

Anyway, just wanted to throw in my two cents for what it’s worth.  I completely agree with Mike’s comment of “zero prejudice”.  The main goal is to enable patients to get to their chosen place of treatment, wherever that is.  

You guys are my heroes . . . let’s keep the discussion going!

[smiley=heart.gif] Jill

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

I am so appreciative of all the respose that I have received since posting about starting a National MM Foundation.  I think it is time to get the ball rolling and since we have several people that are interested in this endeavor I feel that it is very doable.  
I absolutly agree with Mike and Jill about no prejudice.  The foundation needs to be set up to assist any MM patient and there family no matter where they chose to go for treatment.  Some may have limitations as to where they can receive care because of insurance but still need assistance with travel expenses.  

We need to get organized, is there a time when all of those that are interested can log onto the live chat room so that we can discuss this?  Let me know what works as far as a time that the majority can log in for a chat and then I will post it.  Lets keep in mind the time differences between the east coast and the west coast so that as many as possible can participate.  

Mike, I know that you are in the easter time zone.  
I am in the central time zone
Jill you are in pacific, right?
Jesenia, what time zone do you live in, or what is a good time for you?
Reagan, are you in the central time zone?
Just wanted to get an idea of what areas we may have representation from as well as times for our discussion.

Let's try to do this soon, like this week or next.  

Once we get the application process going for the 501c3 status we will need to set up a bank account for all the funds to be deposited in.  You can go ahead and organize fund raisers in your area even though we do not have everything else in place.  Most likey none of the events will happen before we have other things in place.  

Can't wait to hear from everyone!!!!

Tracie

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.

Tracie,

Yes, I'm in the Pacific time zone.  Looking forward to talking!

Jill

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

Mike, I'm sure he'll be interested in participating in at least the initial discussions.  He'll be honored that you asked about the Board, but I'm pretty certain he'll want to defer that until he's done with the Bar.  It's going to be a tough year for him working fulltime, finishing up the last year of law school and preparing for the Bar all at the same time.

I'll keep him posted about your inquiry, and let him make the call though, o.k.?

Jill

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

Hi all,

It took me a while to catch up on posts. I have to say this brought me to tears. My mom and I were just saying there has to be a way to help people with Moyamoya. I am so excited....I started invisioning walks. By the way, I am in Central Time Zone. Evenings are the best time for me. Saturday and Sunday are usually the best but normally I can accomodate just about anything unless I get called out to see a patient. I am in for anything. I think it is about time we raise awareness, get the word out, create support for moyamoya sufferers. The list goes on. Let me know what to do and I'm game.

Reagan

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  

Ahhh...My brain...LOL...This is overwhelming...

So much information but this is so exciting. I think Kim is right, we need an agenda. You threw out a lot of information there, Kim. Lets narrow it down to the most critical and establish the first few things then we can go from there. I think if our agenda is too long then we may have to much to cover. We can then set up another time to meet and create another agenda. We can do this. I know we can and it will be so worth it for all the people we can help.

Reagan

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

My 2 cents is:
Problem Statement
    Goal
         Objectives
              Tasks and who is responsible
               Timeline- (goes along with who is responsible)
This should be done for the process of starting a 501(C)3 as well as what the non-profit is going to do, in my opinion.  (I believe this topic has been discussed on this forum before).  It's great that you all want to get something started, let us know if you need anything, or there is anything we can do.  The talents of the members here cover the spectrum from insurance, medical, fundraising, grass roots organizers, parents, adult survivors, family members of MM patients, college students, etc.  That demographic represents a lot of available talent and resources.  Once you complete your strategic planning, please let us all know what you come up with!   :D
God Bless You All
Michele          

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

Hey everyone,

I am working on setting up a time for all of us to discuss the idea of developing a foundation for mm patients and families.  
Please send me your e-mail address so that I can send you a copy of the agenda and the date and time of the first meeting.  We will meet in the chat room sometime in July.
I already have e-mail addresses for Mike, Jill, Jesnia, Kim, and Margaret.  If you want to be at this discussion then just send your e-mail to me at:

t.oneill467@comcast.net

You can also send me any ideas for the agenda.  We are going to keep the agenda to just a couple of items so that the meeting does not last for more than an hour.  Some of you already mentioned some good ideas for the agenda.  We need to stay focused and not get caught up in the emotion and passion of it all.  See you all in July in the chat room.

Tracie

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

Please send me your e-mail address so that I can send you a copy of the agenda and the date and time of the first meeting.  We will meet in the chat room sometime in July

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

Hi all !!

This is really terrific.  I would love to participate also.  I am in the central time zone in Dallas, Texas.  Kate (daughter w/MM) would be interested also.  Keep me posted please.

Hugs  [smiley=hug.gif]

Cass  [smiley=cowboy.gif]

Good Morning All,

It looks like there will be a discussion in the chatroom on Sunday July 12th at 9:00pm eastern standard time, which is 8:00pm central time, 7:00pm mountain, and 6:00pm pacific time.  

If you would like a copy of the agenda before the discussion please send me a PM with your e-mail address or e-mail me at:
t.oneill467@comcast.net.  

We need to try to keep the meeting going and not stray to much from the agenda.  There will be other discussions so if you have an agenda item please e-mail it to me.  If we can not discuss your item at this meeting we will put it on the agenda for another.  If there is anything that you feel is an absolute must discuss at this meeting please e-mail that to myself or Mike.  We will vote on agenda items at this meeting for the next meeting.  Everyone will have a say in what needs to happen and be discussed.  

See ya all on the 12th.  

Have a happy, safe and blessed 4th of July.

Tracie

Hello all,
Just wanted to bring this subject to the top of the list to remind all about the chat room meeting this Sunday July 12th at 9pm eastern time.  I think I may have e-mailed a couple people with 8pm, I am sorry it is 9pm eastern time.  
If you are interested in participating in this conversation please log on to the chat room.  I will have the agenda done later today or tomorrow morning and will e-mail it to those that have requested a copy and have sent me their e-mail address.  

See ya all Sunday

Tracie

Hi dcg,

Sorry for your friend. Thats also my problem, how to raise a fund for the operation whatever surgery it is.  I'm glad to hear all your concerns for those with MMD family. Please let me know also how I could help with you guys.  I'm from the Phillipines and was diagnosed last August 09,2008 with MMD too. And until now I havent been under surgery/operated coz it needs a lot of money for the operation too.  But I still took my oral medication per my doctors advised.

Anyway, as I have said, I'm what was going on with our MM family, thinking for the benefits of those having MMD.  The best I could share for the meantime is Gods prayers for all of us, I believe that have faith in God is the best.

Hope to  hear from you soon.

Regards,
Betty :)

Hi , my son has just been diagonised with MM , I AM JUST WONDERING IF THEIR IS ANY ONE HERE FROM Canada or whose had their child operated on at The Hospital For Sick Chikdren , his surgery will be sometime in September ....awaiting a date grrrrrrrrrrrrr , most posts i have read have been with people from the USA and only with Dr.Steinberg, thanks all