Welcome, Guest. Please Login or Register
Moyamoya.com
 
NEW search box below... Search Moyamoya.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday ListDonate  
 





Page Index Toggle Pages: 1
Send Topic Print
International Moyamoya Symposium (Read 16503 times)
Michele
Experienced Poster
***
Offline


I love YaBB 1G - SP1!

Posts: 169
Yankton, USA, SD, South_Dakota
Gender: female
International Moyamoya Symposium
Jun 26th, 2009 at 7:25pm
 
http://neurosurgery.stanford.edu/moyamoyameeting.html

Here it is...the syllabus for The First International Symposium on Moyamoya.  There are links on the right for each session of the meeting.
I hope this link works, otherwise just cut and paste into your browser.  WELL worth your time to watch!  Some of the presentations are a bit technical (well, for me anyway!  LOL).   Cheesy
Michele
Back to top
  
 
IP Logged
 
Mar
Ex Member


Re: International Moyamoya Symposium
Reply #1 - Jun 26th, 2009 at 8:42pm
 
Absolutely outstanding!!! Thank you so much for posting the links. I wasn't notified early enough to attend, and I had no idea it was out for viewing. The valuable learning and incite is just amazing!!



Mar
Back to top
« Last Edit: Jun 26th, 2009 at 8:45pm by N/A »  
 
IP Logged
 
Michele
Experienced Poster
***
Offline


I love YaBB 1G - SP1!

Posts: 169
Yankton, USA, SD, South_Dakota
Gender: female
Re: International Moyamoya Symposium
Reply #2 - Jun 27th, 2009 at 3:40am
 
Whew!  I just finished watching all the presentations from the link!  It is divided into four separate areas.  Please take the time to watch these presentations...soooooo much information.  I am sure I will end up watching them several times and learning something new each time.  I just stumbled across the link to the video's as I was checking back often.  Pop some corn, get a tall glass of ice tea and prepare to be amazed..LOL!
MIchele
Back to top
  
 
IP Logged
 
Little Luca
Senior Poster
****
Offline


Whatever it takes

Posts: 343
Somerset West, South Africa
Gender: female
Re: International Moyamoya Symposium
Reply #3 - Jul 1st, 2009 at 9:39am
 
Michele

I'm being asked for a username and password. What did you use?

Mark
Back to top
  

1st stroke in September 2008
Bi-lateral mm diagnosis
2nd stroke in November 2008
Left side surgery in December 2008
Doing just great!
 
IP Logged
 
Michele
Experienced Poster
***
Offline


I love YaBB 1G - SP1!

Posts: 169
Yankton, USA, SD, South_Dakota
Gender: female
Re: International Moyamoya Symposium
Reply #4 - Jul 1st, 2009 at 1:57pm
 
I just clicked on the link above.  Each part of the symposium is divided into time frames.  To the right of the morning session there is a link that says view video.  Just click the link and it should pop up.  You may have to download some Silverlight software to get it to work, but I didn't need to log in.  Hope it works for you!  Let me know.
Michele
Back to top
  
 
IP Logged
 
Michele
Experienced Poster
***
Offline


I love YaBB 1G - SP1!

Posts: 169
Yankton, USA, SD, South_Dakota
Gender: female
Re: International Moyamoya Symposium
Reply #5 - Jul 11th, 2009 at 1:09am
 
For those of you that watched the presentation Dianna M Milewicz made at the symposium, I encourage you to contact her and participate in the research study.  I contacted her about participating and she emailed back the next day.  I was then contacted by Ellen S Regalado, a genetic counselor at my convenience and she went over all the forms, etc with me.  What a wonderful lady.  The difference, that I can see, is this study actually gives you your research data BACK.  I highly suspect my family carries the ACTA 2 gene mutation and I will actually find out!  If any of you haven't watched this presentation I strongly recommend it, and urge all MMers to help us figure out this disease!  It does take them a couple months to get back to you, and they are very up front about that!  After going over family history, it seems my aunt and her 3 grown children will also participate, as well as both of my parents.  Thank God...we will finally get some answers!!!  If I do test positive for this mutation, I will also have my children tested.  It just starts with a simple spit sample!  If anyone wants more info, please get a hold of me!
Michele 
Back to top
  
 
IP Logged
 
Audge
Experienced Poster
***
Offline


Daughter Emily has MM

Posts: 107
Armada, USA, usa, MI, Michigan
Gender: female
Re: International Moyamoya Symposium
Reply #6 - Jul 11th, 2009 at 9:53pm
 
I just watched this.  It was soo interesting.  Michele, I would like the info. please.  My grandma died of strokes and my older sister had a ruptured aneurysm a couple of years ago (She is doing fine they coiled it.)   I did mention this to some of the doctors but no one seemed interested at the time.  I also have a son, a niece and some great nieces that it would be really great to check.
Back to top
  
 
IP Logged
 
Michele
Experienced Poster
***
Offline


I love YaBB 1G - SP1!

Posts: 169
Yankton, USA, SD, South_Dakota
Gender: female
Re: International Moyamoya Symposium
Reply #7 - Jul 22nd, 2009 at 1:53pm
 
"Milewicz, Dianna M" <Dianna.M.Milewicz@uth.tmc.edu>

"Regalado, Ellen S" <Ellen.S.Regalado@uth.tmc.edu>
     
Here are the names and email's for the genetic study.  I first emailed back and forth a couple time with Dianna with some general questions.  She was very prompt in responding! (the next day "prompt").  Then when I agreed that I really wanted to participate, she forwarded my email on to Ellen, the genetic counselor and Ellen emailed the releases and we set up a time to talk by phone.   Ellen was an extremely nice lady.  Explained everything very well, was patient with my questions. etc.  I have since then gotten the DNA collection kit (saliva).  Ellen did warn me it would take a couple months for any results.  Everything was sent out with prepaid mailers, etc.  So, aside from your time, you are out NOTHING!  I think it would be great if everyone participated in this!  They start with the sample from the MMer and parents.  Because of my family history, an aunt and her 3 adult children were also recruited.  We will go from there if a gene mutation is present!  It is kinda scary to think this mutation might be in my family...but knowledge is power!  I truly think this is the beginning of the cure!      

Michele
Back to top
  
 
IP Logged
 
Danielle
Junior Poster
**
Offline


3 year old daughter with
Moyamoya disease

Posts: 71
Michigan
Gender: female
Re: International Moyamoya Symposium
Reply #8 - Jul 22nd, 2009 at 5:16pm
 
Michele, Thanks for the info. I think I may participate in the study also. I am having genetic testing done on Adriana already for other reasons. I just met with genetics yesterday. I am going to email Dianna tonight. I wonder if they can work with the genetic team I already met with. If not I think what you described sounds easy enough. I am worried about having more children but do want more. Danielle
Back to top
  

Positive thinking is key!
 
IP Logged
 
Audge
Experienced Poster
***
Offline


Daughter Emily has MM

Posts: 107
Armada, USA, usa, MI, Michigan
Gender: female
Re: International Moyamoya Symposium
Reply #9 - Jul 22nd, 2009 at 7:53pm
 
Thanks Michele, I'm going to email them tonight!!!   Grin
Back to top
  
 
IP Logged
 
Michele
Experienced Poster
***
Offline


I love YaBB 1G - SP1!

Posts: 169
Yankton, USA, SD, South_Dakota
Gender: female
Re: International Moyamoya Symposium
Reply #10 - Jul 24th, 2009 at 5:20pm
 
Your very welcome! As I said, this takes so little effort on our individual parts and has the potential to benefit the entire MM community. The more participants, the more statistically relevant the data will be and we will also each find out if we carry the gene mutation! It's win/win/win! I encourage everyone who actually has MM as well as their parents to participate in this research! For me personally, the "kicker" was when Dianna mentioned Livedo.  I have had this for YEARS and didn't even know what it was!  I have since learned that:
Livedo reticularis is a disorder in which blood vessels are constricted, or narrowed. It results in mottled discoloring on large areas of the legs or arms (mine is the legs).  Livedo reticularis refers to a condition in which dilation of capillary blood vessels and stagnation of blood within these vessels causes mottled discolouration of the skin. It is described as being reticular (net-like) cyanotic (reddish blue discolouration) cutaneous discolouration surrounding pale central areas.  I have this condition in addition to the vascular birthmark I have mentioned before. 

Lets all do this and help each other on a journey towards a cure! Wink
God Bless You All!
Michele
Back to top
« Last Edit: Jul 24th, 2009 at 5:37pm by Michele »  
 
IP Logged
 
Danielle
Junior Poster
**
Offline


3 year old daughter with
Moyamoya disease

Posts: 71
Michigan
Gender: female
Re: International Moyamoya Symposium
Reply #11 - Jul 25th, 2009 at 11:08am
 
Michele, Wow I have never heard of Livedo. Adriana has always had mottled skin & a reddish blue discolouration in both her arms and legs. She also has many vascular birth marks. Every time I have mentioned the mottled skin to her doctors they say it is normal in babies. I will have to look further into it. She has had ultra sounds on her heart, liver & kidneys to make sure her blood vessels there are normal. Luckily they are. I stretch her limbs numerous times a day. I hope that would help with any stagnant blood. Should I mention Livedo to her doctors? Thanks for the info, Danielle
Back to top
  

Positive thinking is key!
 
IP Logged
 
Michele
Experienced Poster
***
Offline


I love YaBB 1G - SP1!

Posts: 169
Yankton, USA, SD, South_Dakota
Gender: female
Re: International Moyamoya Symposium
Reply #12 - Jul 25th, 2009 at 4:51pm
 
Have you watched Dianna's presentation on the International Symposium website? She shows a picture of Livedo, and in examining people with ACTA 2 mutation, 100% of them had livedo. She (jokingly) asks the doctors if they ever examine their patients?? You can also do a google search and find pictures of livedo. It has never caused me any problems, just that its ugly! Mine is very obvious, and surprisingly, no Dr. has ever commented on it. In my younger years (LOL) I was a very active child, teen, single mother of two, etc. I do not believe that any amount of exercise ever made the livedo better. I do know that it gets much brighter/more obvious when I am overly hot or cold.

To me its just one more piece of this puzzle. I strongly recommend everyone with MM participate in the genetic research! Lets all get closer to the bottom of this mystery!

God Bless You All
Michele
Back to top
« Last Edit: Jul 25th, 2009 at 4:58pm by Michele »  
 
IP Logged
 
Audge
Experienced Poster
***
Offline


Daughter Emily has MM

Posts: 107
Armada, USA, usa, MI, Michigan
Gender: female
Re: International Moyamoya Symposium
Reply #13 - Jul 27th, 2009 at 11:01am
 
I got Emily into to study.  I am waiting for the box of saliva tests to come in the mail.  Smiley  Hopefully we can help some patients in the future!!!
Back to top
  
 
IP Logged
 
Michele
Experienced Poster
***
Offline


I love YaBB 1G - SP1!

Posts: 169
Yankton, USA, SD, South_Dakota
Gender: female
Re: International Moyamoya Symposium
Reply #14 - Jul 27th, 2009 at 2:18pm
 
Congratulations on this step!!!  We, myself and my parents, just did our "spit collection" yesterday.  It was a little confusing, but we managed just fine.  After you spit in the little cup, the lid is hard to get on straight!  The lid has a liquid in it that is covered with plastic.  When you put the lid on, the plastic gets punctured and you have to mix the sample for 10 seconds.  If the lid isn't on TIGHT, you could have a mess.  The sample then goes into a baggie with a little white "cloth" thing in it.  After you seal it, it then goes into a second bag.  Then into a padded yellow envelope.  Then into the fed-ex return packaging!  It's quite a packaging process for each sample!  You are provided pretty good directions, so you should be just fine.  When I first opened the package, I was a little overwhelmed by all the baggies, etc!  But it was pretty easy to figure out after I did the first one!  Ellen had everything labeled, etc. for each of us!
Again, I encourage everyone with MM to participate in this research.  I know I sound like a broken record here, but it really is quick and easy to participate.  The family history takes the longest.  It didn't help that I couldn't remember how old some of my relatives were, etc. Chalk that up to brain damage...LOL!
Thank you Audge for taking the time to help us all! Smiley
God Bless You
Michele
Back to top
  
 
IP Logged
 
Kath41
Experienced Poster
***
Offline


SOOOO happy to have found
this website for support

Posts: 156
Kansas City, USA, usa, 297, 159, MO, Missouri
Gender: female
Re: International Moyamoya Symposium
Reply #15 - Jul 27th, 2009 at 3:23pm
 
Is there another way to contact Dianna? For some reason the email I tried to send came back as "undeliverable?" and I would really like to participate in this study...
Thanks
Kathleen
Back to top
  
 
IP Logged
 
Kath41
Experienced Poster
***
Offline


SOOOO happy to have found
this website for support

Posts: 156
Kansas City, USA, usa, 297, 159, MO, Missouri
Gender: female
Re: International Moyamoya Symposium
Reply #16 - Jul 27th, 2009 at 3:36pm
 
Ok I think I have may have solved my dilema...it might help if I would enter the email in correctly Roll Eyes Hopefully it will work this time Cheesy
Kathleen
Back to top
  
 
IP Logged
 
Michele
Experienced Poster
***
Offline


I love YaBB 1G - SP1!

Posts: 169
Yankton, USA, SD, South_Dakota
Gender: female
Re: International Moyamoya Symposium
Reply #17 - Jul 27th, 2009 at 6:45pm
 
Let me know if you have any more problems!
Michele
Back to top
  
 
IP Logged
 
Michele
Experienced Poster
***
Offline


I love YaBB 1G - SP1!

Posts: 169
Yankton, USA, SD, South_Dakota
Gender: female
Re: International Moyamoya Symposium
Reply #18 - Sep 22nd, 2009 at 5:22pm
 
OK, I have been checking in periodically on the moyamoya.net website.  I recently clicked on the literature review which took me to a link on PubMed.com
After following this link I came across an article titled:
ACTA2 is not a major disease-causing gene for moyamoya disease.
Shimojima K, Yamamoto T.
J Hum Genet. 2009 Sep 11. [Epub ahead of print] No abstract available.

Does anyone know anything about this? Or where a person could read this?
God Bless You All
Michele
Back to top
  
 
IP Logged
 
Michele
Experienced Poster
***
Offline


I love YaBB 1G - SP1!

Posts: 169
Yankton, USA, SD, South_Dakota
Gender: female
Re: International Moyamoya Symposium
Reply #19 - Sep 23rd, 2009 at 8:58pm
 
Thanks Mayhem for sending me the study on ACTA 2, haven't read it yet but will soon.  If anyone has a way to get this latest study from Sept 09, please let me know, I am very interested in reading it!
Thanks
God Bless You All,
Michele
Back to top
  
 
IP Logged
 
LWelch010309
New Poster
*
Offline


I Love MM.com!

Posts: 16
Re: International Moyamoya Symposium
Reply #20 - Mar 4th, 2010 at 2:50pm
 
Michele - did you find out about the ACT2A in you and your family from last summer? I just sent in the saliva sample in the mail yesterday and did the informational interview Tuesday. From what Ellen told me, they have tested 200 people with MMD and no one has came back with the mutation. Only people with MMD AND something else - early onset CAD or something else vascular, has presented itself with the mutation, which is interesting. Please let me know what anyone else knows or if anyone else has been tested.
Back to top
  
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print



Moyamoya.com Forum » Powered by YaBB 2.4!
YaBB © 2000-2009. All Rights Reserved.


2003-2018 Web Vision Enterprises LLC All Rights Reserved. All information on this site is protected by international copyright laws. You may not re-distribute any information from this site without written permission from Web Vision Enterprises LLC and the webmaster of this site. Violators will be prosecuted.

You may view our privacy policy and financial disclosure statement here





Valid RSS Valid XHTML Valid CSS Powered by Perl Source Forge