I was thinking about starting a picture page for those from the site who have Moyamoya and their family/supporters.  Hopefully, it would be a good way to put faces with names for those of us in the "moyamoya family".  I'd like to put up pictures of all of us before, or after our surgeries, not just the hospital type pictures... know what i mean?

What do you think?

DJ

Hi DJ,
Thnak is a great idea.  I have often thoiught of having a small profile on the side. eg. relationship to mm'er. age of mm'er, surgiers, strokes, severlity, etc.  

DJ this webiste is wonderful.  Your mom, and all 'in the family'   mm'ers and support are awesome.

I know if I had this webiste before my sisters stroke.  I would have pushed/demanded the surgeries.  After the diagnosis at Mayo Clinic in 12/97 they had a wait and see approach.   Knowing what I know now---waiting is not an option.  

But thank you.  We will see you in August.

Janice

Good idea DJ!!!

I have pics on my computer, but don't know how to attach it???   :-/

:) Sara

Sounds great deej what will you come up with next, your something else.
                                 Me again

I've started a picture page for our Moyamoya family members from the site so you can put faces with the names.  Pictures I have so far, which I've taken myself (who I don't think will mind are used on the page) are located at: http://www.moyamoya.com/mmfamily/index.html

If you have pictures of yourself (or your loved ones) you would like added to the page, there is info on that page for sending me pictures to add.  I haven't added the link to the menu bar at the top of the page yet, but if it goes over well, I will at it shortly.

Check out the link below and let me know what you think!

http://www.moyamoya.com/mmfamily/index.html

[smiley=headbanger.gif]

DJ

Just added pictures of Rena & Tyler, Sandy and her family, Sara and her fiance Scott...

http://www.moyamoya.com/mmfamily/index.html

Send me those full sized pictures and I will do the rest!!!

;;D

Added pictures of Arianna and LisaH tonight...

http://www.moyamoya.com/mmfamily/index.html

I've updated all of the menu's on the site incorporating the new picture page.  You can get there now by following the link under "Pictures" on the menu bar.

Keep sending them!

;;D

Added a picture of Angel Arianna today... :)

http://www.moyamoya.com/mmfamily/index.html

Joe has joined our moyamoya family album!

http://www.moyamoya.com/mmfamily/index.html

Just added a picture of Shari!

http://www.moyamoya.com/mmfamily/index.html

The picture page is Great!  [smiley=sayyes.gif] I have a terrieble time with names and get things so jumbled as to what goes with who. Having pictures just seems to put more in perspective for me.
Way To Go DJ! [smiley=headbanger.gif]

Rena, yeah it works pretty good and it's definately nice putting a face with a name!

Just added Louise, Annica's daughter from Sweden!

http://www.moyamoya.com/mmfamily/index.html

Oh my goodness!

Annica, your daughter is beautifull!

Sara

Ditto what Sara said... absolutely beautiful Annica! You are truly blessed!

Hi Sara and Mar and others!

As a mother I do think my daughter is beautiful of course and I feel very blessed to have her and thank you so much for your kind notes on the board.
Louise is very thrilled to see all the pictures on the familypage and I beleive it is good for her to have proof there are other kids just like her out there in the "big world". Makes her feel less alone with this strange and unusual disease.
It is so good to see all the "mm-heroes" on this board and also have faces to all the names, you truly are a fantastic bunch of people, do you know that?

Love you.

Annica (Louise says hello to everybody)

Added pictures of Little Sandy and Savannah (Sandy's beautiful children).

http://www.moyamoya.com/mmfamily/index.html

Added post op pictures of Christy (babyblue), Rena and Tyler tonight.

Added a couple of pics of Timothy (tommyb) the other day I forgot to tell you about...

Just to make sure everyone knows... you can click the "little" picture on the page and get the "full sized" picture!

http://www.moyamoya.com/mmfamily/index.html

Added more pictures of Joe (joesmom) and his family, along with one of your new members, David.

http://www.moyamoya.com/mmfamily/index.html

:)

Added another pic of the gang that was able to hook up at Stanford a couple of weeks ago...  Hillary & Holly, LA & Jack, Connie.  Check it out!

Thanks!! I love that picture Deej! It made me cry for some reason. I think because this was the first time I ever saw that many of our mm family together in one picture, it just touched me so. How far you've come Deej... you gotta feel proud. [smiley=winkkiss.gif]

Added new pictures of Kyle & Chloe!

http://www.moyamoya.com/mmfamily/index.html

How gorgeous is that Cloe she is adorable, look out mom and dad when she gets older. What a cutie.
                        Nancy
                             

Okay, I just HAVE to ask.  Are those the real members of KISS there with Timothy in his picture?!?!?!

Diane

DJ

How can I send you a picture of Cara ?  I don't have a scanner or digital camera...but have TONS of photos...:-)

Thanks,

Carol

Added pictures of David and his wife Angie at the Golden Gate bridge... Mar, Fran, LisaH and myself from our get together in St. Louis.

http://www.moyamoya.com/mmfamily/index.html

;;D

Great Pics you guys!

[smiley=thumbsup.gif]

Added pictures of Trey (before his surgeries), newcomer Judy, Rhonda & Kristina!

http://www.moyamoya.com/mmfamily/index.html

Got more pitures form Tara's father, Campbell (gotchlorine).  Have more pictures of her scar if anyone is interested in seeing what that looks like.......

http://www.moyamoya.com/mmfamily/index.html

This picture-page is truly a terrific idea! In spite of all your responses and loving support I do feel just a little bit lonely over here in Sweden. Many of you meet in person (must be a fantastic feeling) or talk over the phone and so on but we´re so far away in distance and language but when I see all this pictures on the "familypage" I really feel that we´re all in the same boat and that is a comforting feeling. So please keep on sending in your pictures. The picture of Baby Trey put tears in my eyes, what a georgeous child!!!!!


Annica :-*

Oh my gosh I have to agree that Trey is precious.

Hey everyone.  I think that Trey is gorgeous too[smiley=wink2.gif], but I am his mommy.  I will send more soon.  I am going to send some of his surgeries and some at his birthday party.  He had a good first birthday.  We are going to throw him a second first birthday party after all of the stitches desolve so he can feed himself and get cake all over.  I will send some of that too, but it will be a few weeks away.

Thank you all so much for being here and for this site!!!

Michell

Don't we have a beautiful family????? As they say, maybe I am prejudiced, but just look at us!!!!  I think I might want to adopt that little Trey.  I don't have any little boys, only girls.  He is just beautiful.  Those big brown eyes!!!  They could melt a girls heart.  And Tara's beautiful brown curls.  Was that at prom?   I think more people should sent in their pictures.  Here I am saying this and I haven't even sent in one of myself.  But, seriously more of us need to send them in so that we can put a name with a face!!!  How about it???
Laura from Louisiana ;;D 8) [smiley=laugh.gif] ;) :o ::)

Added a pic of Chris (chrisb1), Mike & Debbie!



http://www.moyamoya.com/mmfamily/index.html

Just put up pictures of Brent and Jenna!

DJ way to go on the MM family album  :D its hard to describe how it makes you feel putting real faces with all of us, instead of just words, this really does make me feel like we are all a family  :'( tears of joy honestly  ::)  I can't wait to see more pictures. keep up the good work!
~jenna

Sorry I haven't updated the picture page lately.  Was out of town for a week, blah, blah...

Anyway, just put up pics of David and his family, Tricia and her family.  Also, I split up the picture page into two different pages so the pictures would load a little bit faster.  Here's the link to page two:

http://www.moyamoya.com/mmfamily/index2.html

;;D

DJ,

I love the pic pages.  I sent some new pics of Trey a few days ago +.  Did you get them?

Michell

Hey DJ,

Any clue why some of the pictures don't show.  The name are there but the pictures aren't.  Just curious if there is something I need to do.  

Thanks,

David

I agree.  I am only getting a few pictures to come up.  Several only have the names and the pictures are not there.  Is there anything that I am doing wrong?   :-/

Weird I get all the pictures, some just take longer to load. Is there a diffrence in how some computers load?

I love all the pictures, but it's depressing that so many people have to deal with MM. I'm glad everyone is finding this site for support though.

Dang rare disorders/diseases cause a rush of mixed emotions!

I don't have a problem getting the pictures at all they come up instantly. I have the high speed I wonder if that matters. Once I wanted about 5 seconds for the bottom half to come up.
                               Nancy

It is not the time it takes, because I have high speed also.  It brings up the full page, but some of the names are there, but the pictures aren't.   It just lists their names and there is no picture below the name.  Can anyone tell me what might be the problem?  DJ?????
Thanks, Laura [smiley=huh.gif]

Same thing here.  I have a cable modem so it is not the speed.  I get about half the pictures.  The rest are just the names.  I didnt have that problem before.  I do not know what the difference is.

David

I'm not having any problems and I tried it on both high speed and dial-up.   Don't know what to tell you but I'm sure DJ can and will help out when he has some spare time. :-/

Lisa

Put up some more pictures today of Kris (scgirl) and the entire gang out at Stanford back in June.

If the little thumbnail pictures don't come up for you, you can still click on the thumbnail and get the "big picture".  Hope this helps those that are having probs...

http://www.moyamoya.com/mmfamily/index.html

DJ:  It isn't that I can't enlarge the ones that are there, but only about l/2 of them actually show a picture.  Such as,  Tricia Gilberts picture.  It only shows her name, but no picture is shown, only a blank space.  Only one that you recently posted for scgirl came through.  The other one, it shows her name, but there is a blank space where her picture should be, but no picture.  Am I making any sense?  My husband even came and looked at it, and he is pretty computer literate, but he couldn't understand why it was doing that.  If you need any further info, please let me know.  I believe David is having the same problem.  Thanks, Laura [smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif]

I've done some work on the pages to see if it will fix the problem.  Try going to the main page again and see if it works better this time...

http://www.moyamoya.com/mmfamily/index.html

Just updated the picture page with a picture from Lee (daisy).

http://www.moyamoya.com/mmfamily/index3.htm

-DJ

Just updated the picture page with a picture of Jared and Jessica (jaredsis2)!

http://www.moyamoya.com/mmfamily/index3.htm

DJ, I send you a pic  2 weeks ago, and it still isn't on the page.
How come?

Lilian,

I must not have gotten it?  I looked through my email and didn't see a pic from you anywhere.  Can you send it again?  I'll be looking for it.

-DJ

I'll send you the picture again...

Got it Lilian!  Added your picture and CarasMOM & family!

http://www.moyamoya.com/mmfamily/index3.htm

Had a wonderful dinner tonight with Tara's family (gotchlorine) and Matthew's family (Matthews Dad) - from the video on the main page...

We had some good stories and it was wonderful to meet with others who have walked in the same footsteps!

Great Stuff!!

http://www.moyamoya.com/mmfamily/index3.htm

[smiley=headbanger.gif]

Hey Deej,

That is the most wonderful picture you could give anyone on this site.  To See Mathew and Tara, that is uplifting and beautiful.  

How did your test go for you?  It must of gone great, because the picture shows a rib joint.  No worries about blockage there [smiley=laugh.gif]  

Take care

Wayne  [smiley=cowboy.gif]

;;D..cool photos, DJ...I was wondering when you guys were getting together as Jill was so excited about it !!!  ;;D.  Like Wayne asked you...I'm wondering how your tests went, too.... I guess still on going as you're there until the 3rd.  Have a GREAT time and hope all your tests come out positively GREAT.  CarasMOM

Met with Chelsie and her family today in Dr. Steinberg's office.  They actually called us both back at the same time!! lol  Pictures are up now...

http://www.moyamoya.com/mmfamily/index3.htm

My tests turned out good.  Dr. Steinberg was very impressed with how well my xenon CT turned out so I'm good to go until next time.

;;D

More pictures!  Tara, Jill, Campbell (gotchlorine), myself, Chelsie & JJ got together tonight at Chili's.

We're all meeting Chelsie at the hospital bright and early in the morning to be with her and her family for her surgery...

http://www.moyamoya.com/mmfamily/index3.htm

Put up a picture of one of our newest members, Doug Grant and his family.  His 5 y/o daughter, Rachel, was diagnosed in late October with moyamoya...

http://www.moyamoya.com/mmfamily/index3.htm

Just put up the newest picture of Mandy that her dad, Mark, sent me!  It is one of the greatest pictures that I've ever had the privilege of posting if for no other reason, SHE'S STANDING UP ON HER OWN!

She looks GREAT!  Go back to page 1 of the pictures to see her as she was the last time I had the pleasure of seeing her in person...

[smiley=headbanger.gif]

Thanks for the picture Mark!!!

DJ

Nancy and Mark (and Mar as aunt . . . DJ, too),

The latest picture of Mandy made me absolutely cry.  SHE IS SO BEAUTIFUL!!!!!!!  What an inspiration to all of us to see her looking so good . . . the progression from hospital to present day is amazing.  Reminds us again of the road we all travel with this disease (as if we needed reminding).

Lots of love to all of you in my new MM family,

Jill

Thanks Jill that picture was taken the night of the morning that she had the seizure so you can see she is o.k. from it, I just hope its the only one.

I just saw the picture and I went like Ohh My God!!
She has changed soo much, she's realy beautifull.

Just added another picture of Christy (babyblue) with Dr. Steinberg taken at one of her follow-ups...

http://www.moyamoya.com/mmfamily/index3.htm

Just added a picture of your newest family member, Brad, and his little brother Nick.

Also, a picture of Lee (Daisy) that I put up a while back and forgot to post about...  SORRY Lee   :-/

http://www.moyamoya.com/mmfamily/index3.htm

Hi,
My name is Jeanine and my daughters name is Amanda.  About 4 years ago my daughter was diagnosed with moyamoya.  It was by sheer accident that she was diagnosed.  I just felt that she needed to go to the neurologist because she was having headaches and since she was born premature and has a heart condition,  years of physical therapy and occupational therapy I always use precaution with her.  I live in Las Vegas Nevada,  We are originally from Brooklyn, NY.  the doctors in Las Vegas are not the best,  to put it mildly.  We went for a checkup and an MRI in November of 2000,  I didnt here anything back from the doctor,  I went for her follow up appointment in December.  Before we knew it we were in the hospital getting a cerebralangiogram.  After the procedure the doctor said there was no hope and that she would just have stroke after stroke and that would be that.  I just could not let that happen,  She never had a stroke before.  So I went to her school and spoke to her therapist and principal .  they went on the internet and found Dr. Michael Scott,  a saint,  we were provided with miracle flight for children to get there.  I was devastated and plus I just lost my mother to brain cancer 2 years prior to this news.  I had no money whatsoever besides that I just knew that my baby had to get help no matter what.  so we went to Boston childrens hospital and stayed in hospital hospitality.  It was like God himself was guiding us.  Amanda came through the surgery so well and after the surgery she was able to read and differentiate letters from numbers something that she could never do before with all the therapy she was receiving.  Now she is a healthy 12 year old and thank God and Jesus that she has never had a major stroke.  I thank Him everyday that goes by.  She is a child that is full of energy  and beautiful.  Dr. Scott was a saint.  Sent straight from above. Amanda is now a 6th grader.  Unbelievable what happend next,  The doctor that I took amanda to that diagnosed her was the only pediatric neurologist in town  and I really did not want to go back to him even amanda was afraid to go back to him.  But as luck will have it,  a new doctor moved into town Dr. Linda Brown,  who used to work with Dr. Scott in Boston.  I could not believe that!!  So she knew everything about moyamoya and she is still Amanda's doctor.  Amanda is doing very well some days are better than others because her immune system is very weak so she gets sick alot but besides that she is doing very well.  I now work for the police department now and her older brother is doing well too.  

Thank you for letting me share my story.  Please write back.  I am writing to you at work.  But you can email me at home at edmandi@cox.net and you can email me at work at j7242s@lvmpd.com

     

Added a couple of pictures fo Jesenia (freckles) to the picture page...

http://www.moyamoya.com/mmfamily/index3.htm

Added pictures of Arthena and Ashanti, Mark Rowland and Tara...

http://www.moyamoya.com/mmfamily/index3.htm