I have some VERY EXCITING news I'd like to share with everyone.

I've recently been contacted by a group of genetic researchers at the University of Texas Medical School in Houston.  Dr. Dianna M. Milewicz and her team have come across some wonderful information that could be very helpful in understanding more about moyamoya disease.

I would like to quote some of the information from the research study...

"We have recently identified a gene that causes Moyamoya Disease. Through our research, we have determined that this gene is not the only gene responsible for Moyamoya Disease. We are interested in identifying further genes that cause this condition. We are asking individuals with Moyamoya Disease to participate in our research study to identify genes that cause this condition."

I would ask everyone to Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or and seriously consider participating in this very exciting research.

I have personally been through the entire process of submitting my information for the survey and it is an absolute breeze, lol.  I am anxiously awaiting my results.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

NOTE - You will need Adobe Reader to view the file.  You can download the Reader for free from this page if you do not already have it installed on your computer: http://www.adobe.com/products/acrobat/readstep2.html

Again, please consider getting involved with this research.  The more information they have access to, the more information they may be able to gather about moyamoya and why it happens.

If you have any questions about the study or problems accessing the document online, please don't hesitate to contact me: deej@moyamoya.com

Thank you for your time,
DJ

Dj,

This is very exciting! I will contact the people for the research asap.

Christy

Hi DJ:
That is great news. I will definitely participate by sharing Amanda's medical background. I have always felt that moyamoya is genetic. I found a distant cousin on my side that also has moyamoya. Did they tell you what the name of the gene is that they discovered? We have another trip to Sick Kids,in Toronto, Ontario,in a couple of weeks so I would like to share this information with Amanda's surgeon.
Tricia

I can not open it??

Hello again DJ:
I cannot open the file either. I will try from work tomorrow and hopefully it works there.
Tricia

When I read this I was so excited. I called them right away and left a message to call me so I can participate. This is a huge breakthrew and it is about time something was discoverd about this condition.

OMG!  I read this and I was so excited I was on the verge of tears (if I wasn't at work I would have been crying!).  I emailed the two doctors to find out how I can participate.  Thanks DJ!  VERY EXCITING!!!!!

-Shari

:( I couldn't open either of the sites..........I would like to be able to partisipate in a study too...... :)

 That's the best news I 've heard in a long time!!!! Finally some research. I just sent my e-mail to them.Thanks DJ!!!!!
Mary Grace

 I'm no computer wizard at all so I may be way off base,but do you need to download something like Adobe Reader to access it???
Mary Grace

Hi Mary Grace-
Yes, it is a pdf file so you would need Adobe Acrobat Reader to view it.  This is a free download.
Hope that helps a little!
Chelsie

I just called Dr Van Tran Fadulu at the University of Texas looking for more information as indicated in the flyer.  She was not available - but I left a message!  I hope she gets back to me soon.  This is so exciting!  Thanks DJ!

mg12061 wrote on Apr 19^th, 2007 at 10:45am:

I'm no computer wizard at all so I may be way off base,but do you need to download something like Adobe Reader to access it??? Mary Grace

Mary, yes, you will need to download Adobe Reader to view the file.  You can download the Reader for free from this page: http://www.adobe.com/products/acrobat/readstep2.html

pmteet, triciab, elanie... if you are still having trouble viewing the flyer send me an email and I will put it in a version you can view and send it to you.

DJ

This is fantastic, at least now we will be able to identify newborn children, before major strokes occur. My wife asked me what this meant, what is your thoughts on what could happen with this?  Could you develop a cure with this? Possible gene inhibitors?  If so, what about all the children and adults that have had the surgery? Just questions of thought? I am so excited, I am crawling out of my skin, I just don't know why

          Megans Daddy

I sent off an email saying we would participate.  I am curious about this -- since we have NO previous history in our families.  

Maybe it was our genes combined??  But our three other children, so far, are symptom free.

Kim -- Matthew's Mom

   I'm very insterested to ehar what the resultsof this will be.Although I don't have anyone else in my family diagnosed with moyamoya, I have a very strong family history of neurovascular issues.My dad and grandmother died from Circle of Willis Aneurisms,My grandmother lived most of her life suffering from what everyone called "spells", she would have periods of numbness, balance problems, and vision problems . My sister had a surgical clip put on a Circle of Willis aneurism.My dad's dad died of a stroke many years ago.My dad's sisters and my sister suffer from migraines,as well as my brothers.It just seems so ironic to have so many in a family with neurovascular problems maybe there's some sort of conection????Who knows what our ancestors died from or suffered with that was just not properly diagnosed.It would be great if a genetic test was all we needed to get an idea if there was a predisposition for,or definitive diagnosis of moyamoya.Very exciting news this is!!! Especially since I have 2 other children.....
Mary and Kathleen

I haven't been here in weeks.....so sorry guys....live is keeping me way too busy lately. Thanks for the personal emails Deej....that brought me over to check this out! I have already emailed my contact info to them....hope this will shed a little more light on MM and what it is all about.

I miss you guys....but I am swamped here....my house is on the market....spring soccer season started.....bills are behind.....still entangled with the medical appeal of 1/4 million....etc.....and my health seems to be going a couple steps backwards. My blood pressure is running very low lately....100 over 60's and we should run on the higher side for the grafts! So that's not a good thing....and I feel lightheaded and dizzy from it. Need to get checked out I guess....but seems like always no time.
Anyhow.....you all take care.....Diane : )

[smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif]
Oh, I am so thrilled to see the enthusiasm about this research!  I was the same way when I heard about it!  Kyle's neurosurgeon had supplied the research team with our ph no.  I sent Kyle's "spit-kit" back about 2 weeks ago and hope to get results soon.  The Dr I spoke with (Scott Bourgeois) was very informative about the study and just very pleasant to talk with.  Won't it be great if they find a genetic connection that can easily be checked?!?!?  

Sue

DJ,

 This is extremely exciting.  It's GREAT to see progress with moyamoya.  Someday, and hopefully very soon, this will be able to be recognized and treated through early detection.  You have and continue to be a driving force in the attention that all moyamoya patients get.  

Thanks for that,

Ron

DJ,
 This is very exciting news. I am calling tomorrow. I have always had concern about my children and grandchilds having this. Now I know that is genetic and can inform them. I am so thankfull to you for keeping us informed.

Skay

This is so exciting.  I will certainly participate in this wonderful research study.  I hope to see you all in San Antonio in June!
Have a great night!
Linda

I fired off an email as soon as I read DJ's message.

This is what they are looking for as a prerequisite:

"Hi Nicola,

Thanks for the quick response. We can absolutely work together. Our research does not discriminate based on geographic location. We got quite a few responses already. I'll get back with you in as timely a fashion as I can in order to get things going.

In the meantime, it would be a big help if you could start to gather your family's medical history. We are most interested in heart attacks and strokes, high blood pressure, high cholesterol, smoking history for you, your kids, their kids, your siblings and their kids, your parents and their siblings (and their kids), your grandparents and their siblings (and their kids), etc. You get the idea. We also want to know the age that these (and any other) diseases started for family members.

Looking forward to our conversations/emails,
Dr. Scott Bourgeois"

This was sent the next day! I was very gratified at the quick response and that I can participate in the study despite being nearly 8000 kms away. I strongly urge anyone else to participate from as wide an area as possible, because the more data they get, the better their study will be. Perhaps even a cure might be developed...

Cheers
Nic

I got the same response when I sent my email - response was received in just a few hours.  I'm very excited to participate!  I'm going through my family history now with my mom's assistance.  I participated in another study at Hosp. of the Univ. of Pennsylvania - it was more of a blood flow study - not specifically MM, but I'm willing to participate and VERY excited to hear they might have found a gene(s)!!!

-Shari

Hi Everyone,

This is Dr. Scott Bourgeois.  First, I want to thank everyone for such a rapid response so far.  Also, I'd like to apologize for my form emails I've sent out.  If you guys would please be patient, I'll be sure to get back with everyone in as timely a fashion as possible.  In the meantime I wanted to provide everyone with our website link.  The website is not up to date, but it does have some good info.  The link is:

http://www.uth.tmc.edu/schools/med/imed/med_gen/index.htm

Thanks again, and I look forward to working with you all.

Scott

Thanks DJ, this is a very excited news, I will contact them to be participate for the research.

Kieu

i'll be participating, dr. scott was really friendly and explained what the plan was for the study, i'm excited to begin the steps when they are ready.

Sorry for the delay - don't check my mail very often any more but I'm glad I did today!

After reading DJ's posting I sent an e-mail right away and I also printed the info and I will call ASAP in the morning and hopefully will be able to actually to someone!

FYI - I am coming up on my 2nd aniversary from my 2nd surgery on May 5th.  Doing better since I FINALLY (Dr's after me for over 6 months) gave up work!  Still have good days and bad days but I've learned to cherish the good one's - which by the way are now out numbering the bad- and go with the flow when I have a bad one - or two!

DJ's thanks for all the work and good you have done for all of us!  You are a Godsend!

Hey!  I do have a question if any one out there can answer!  Does anyone know how many of us there are out there?  Just curious!

My heart is with all of you all the time!

Linda S :o 8) ::)

I called a week ago and have not heard anything.  :( I will try again next week. I am very excited about this, Has anyone else heard back?

Michelle

Hello All!

I just got off the phone with Scott Bourgeois from University of Texas.  He is very nice and he informed me of a lot of information and told me what the study is all about.  It sounds very interesting and exciting.

Everyone interested and not called should and if you have called and not received a call back you should keep trying!

It is best to call because Scott said they swamped with e-mails.

Linda [smiley=laugh.gif]

This is so exciting!
A chance to make a difference.

I'm signed up!

LA (Linda A)

Hi Everyone,

This is Dr. Scott Bourgeois again.  I just wanted to make a slight correction to Linda's recent post.  Actually, it's currently better for you guys to email me.  That way I can email you back the initial letter and consent forms for you to review.  Be sure to send me your contact info in the email so that I can call you back when your turn comes.  Your patience is, again, appreciated.

Thanks again for such a great response thus far.  I can't wit to meet you guys in San Antonio!

Scott

HI Everyone  :) Just wanted to let everyone know that I got a call from VanTran (sp??) from the study and she will be @ OUR REUNION  she said the tests results might not be back by then ( I should get my pacakage in about 5 days)  I am gonna send her my CD reports and some copies of my written results.......... :) I let her know that WE were all very excited about the study.....
ELAINE

Hello everyone:
I sent an email off today to see whether or not we can participate because we are from Canada, hopefully we can.
Tricia

Hi Everyone,  
 
This is Dr. Scott Bourgeois again.  I wanted to let all you guys know that we have a new genetic counselor in our office who will now be calling you guys back and working with the Moyamoya project.  Her name is Ellen Regalado.  I will, obviously, still be involved, but I will be primarily going back to my clinical duties/responsibilities associated with our research.  However, if any of you need anything at all, you can ALWAYS email or call me.

Thanks again for such a great response thus far.  I can't wait to meet you guys in San Antonio Tomorrow!

Scott

Thank you DJ...I've been so busy that I haven't been on the board...between Em, graduating from Berklee etc.etc. BUT YES, I will participate in the study.
Thanks again and hope you and your family are all doing well!

LOL,
irene

PS) It's already been 2 years (6/21/05) since my surgery and so far so good.  Of course I must watch the left side but OH WELL! Thanks again for everything.

Hi everyone!  Well, the research team was, indeed, at the reunion and it was a pleasure meeting and talking to everyone!

I gave them my family history and my, ahemmm...spit (my DNA)!  I know it will take some time - but can't wait to hear any further news!!

Thanks, Dr. Bourgeois!  (And Van - she's the one who took my history!)

-Shari

I still have a hard time with this participate thing, I send email awhile ago( about 3-4 weeks) to Van Tran, she send email back ask me my phone number and best time for her to call, I responded and did not hear from her since then.  I probally try again when I can get some phone number. :(

I noticed the last posting on this subject is already coming up on almost a year.  Any new updates?

there is a post called "GENETIC TEST RESULTS! Oh Boya! " that has some results posted.
becky