I wanted to take a second to share with you some of my feelings about this site... the reason I've upgraded the old "message board" to this new type of forum... and some of the reasons I did it.

When I was first diagnosed with Moyamoya, I immediately jumped on the internet to see what I could find out about the disease (mainly so I could figure out what exactly I was going to be dealing with).  Secondly, I wanted to find others who were going through (or had already been through) the same emotions I was experiencing being diagnosed with such a rare disease.  I wanted to communicate with other people "out there" who were knew exactly what I was going through.

Much to my dismay, there was virtually NOTHING out there at the time which could give me a positive outlook on my future with Moyamoya!

Sure, I found a lot of generic information about how Moyamoya could be a fatal disease...  how there wasn't a lot known about the disease... blah, blah.  But the one thing I found difficult to find on the internet was actual communication with other Moyamoya sufferers and supporters!  People who had "been there, done that"!  It left me feeling alone and still with so many questions!

I remember finding that 1-800 (turned into a 1-900) phone number to the supposed "Moyamoya Support group" in Iowa that led to nowhere.  I remember the disappointment I felt when there wasn't anyone there for me to talk to.

I also remember the absolute comfort I felt when I was finally able to run across a few folks on the Harvard site (and I do mean a few) who I could actually communicate with.  I met Kathy Van Meter and her son Brian (who had already had surgeries at Stanford), Tricia, and Elaine C.  It was the first time I actually felt like I wasn't in this all by myself and it completely changed my attitude towards my future with Moyamoya!  THANK YOU Kathy, Brian, Tricia, and Elaine!

As a sufferer of a rare disease, I can honestly tell you one of the most comforting feelings in the world is knowing you aren't the only person in the world who is experiencing the same feelings.  Those of you who've been there know exactly what I'm talking about!

With that being said, I think this new forum can make a real difference to others who find us.  Not only to other Moyamoya sufferers themselves, but to their families and friends who are searching for answers.  This format will give us the opportunity to communicate more easily and become more of a support group for others out there who feel like they are "all alone" when they find out there is something wrong with their brain.





Respectfully,
DJ

DJ,
I feel real lucky that I found this site so soon after Tyler was diagnosed.  It has been a long road and having you and the others there when I need someone has really helped. Tyler has had his follow-up testing and I hope to recieve the results this week. Thank You for all the help.
Rena

Hi- glad to have found this site.
I was diagnosed with MM after a major stroke at the age of 10. (im 34 (ugh) now and had bypass at the age of 12. I did not go to a dr for this since i was 19. Finally I found a great neurologist who did tests and said that I have good blood flow. Im newly married and because of your wonderful site Im getting useful info on having children.
I guess it really is true- With God- All things are possible. I never thought I could even think of having a child of my own- maybe I can.
Love this site. When I was diagnosed- there were 6 papers on MM. My Mom had to call Germany and Japan to get them. This site is a gift from God.
 

DJ,

In 1997 when I was diagnosed with mm, the 800 # in Iowa actually helped me:  They gave my husband the names of three women approx. my age & their phone #'s. Since I couldn't speak very well at the time, my h called them (one in N. Dakota, one in Texas & one in Michigan )  They would e-mail info about Stanford  (two were Dr. Steinberg's patients) & they were my life savers!!!, just like you are today, with your fantastic mm website!!!!!!!!!  THANK YOU FOR ALL YOUR HELP, DJ!!  YOU ARE ONE OF OUR EARTH ANGELS!!!  deb

Thanks so much, your an angel sent from heaven. You have helped so many people and give people hope and peace. I know everything will be ok and your a FANTASTIC person. May all your dreams come true

Love you bunches and bunches, Saundra

DJ
You have done such an amazing job with this site, it will help so many people. I remember when Amanda was diagnosed with moyamoya in March 2000. We went searching for any information we could find and there wasn't much to be found. It is so much better to hear information from people who know what you are going through and have experience with the disease. We are all lucky to have you. I hope you know how much myself and my family appreciate the time and effort you have put into this site.
Thankyou 
Tricia

8)DJ you have done a wonderful thing. Created a place where people of all backgrounds,Rich and Poor can congreate and tell their stories and hardships and get feedback on what to do!
It was through this website I made contact with Dr.Steinberg in July of 2004 and to be in Stanford on May 1, 2005,I had peoplegiving me strength all the way!

DJ Be Proud!
I am not computer savvy.But You given us way to commuicate

Kevin Allen (cubbie) Thanks For Your Hard Work!