http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?catselect=MandG_cat Moyamoya.com Forum en-us Moyamoya.com Forum Mon, 11 May 2026 03:08:22 GMT http://blogs.law.harvard.edu/tech/rss YaBB 2.4 Revision: 1.28 30 http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1641957888/0#0 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1641957888/0#0 Wed, 12 Jan 2022 03:24:48 GMT One of the principal stuff to look out for is the trait of the internet site. If the website seems shoddy and untidy your sparkles must cross up, because if a big name is truly making the cash they are claiming to make, they ought to no longer have a hassle making an investment in a pleasant website builder or a professional who will construct them a clever internet site. After all, in case you're expected to chunk out a few $s then they ought to at the least have an adequate amount of regard that allows you to send you to a fitting internet site.<br /><br />A further characteristic to appearance out for is touch facts. They ought to have touch statistics on their internet site. The best aspect so that you can do is to contact them (no longer to purchase or join up with this system), but to notice how unexpectedly they react and how inclined they're to supply you particulars about anything they're supplying.<br /><br />Then, or simply one of the key stuff you have to do is to do a take a look at on whose[dot]com to find out who the internet site is registered to. Lots of agencies have their privateness protected this means that you cannot set eyes on their particulars. This is fair for precise sorts of agencies, however if it's a site that wants to promote you cash building e-books or some thing element to do with being profitable, they must be eager to be transparent and display who and wherein they are.<br /><br />An address is likewise proper, but thousands of those get wealthy short businesses have phony addresses. A in addition factor to appearance out for is their claims and memories. Does it seem to be honest or placed on? Do the humans come upon actual (if there are pix). How realistic is the claims? Is there an photo of the proprietor of the site who claims to take home all this wealth? Is there a video of the individual?<br /><br />Also, if you without a doubt need to acquire some money making e-book, attempt your fine to rather buy through Click bank, as you're assured you may get your coins again should or not it's a bunch of bs crap. One of the maximum critical activities is to do a seek on the software's call and the person's name. You can search absolutely the call, the call and the phrase (sc*m), call and (opinions), name and (make cash). Trust me, if men and women had been conned, they are going to permit recognize approximately it. If men and women misplaced cash they may be no longer gonna maintain silent, but you should additionally be open-minded while reading these posts.<br /><br />Some folks that are competitors will create posts with regards to a exclusive path and say that it's a scam and badmouth them. As a rule those human beings will post on sites where they are able to as nicely insert their internet site links to the post so it is simply publicity for them. If you find a submit wherein you've got a feeling that the character is without a doubt true, it perhaps is actual. There's an aphorism that asserts " If one character tells you you're a donkey, overlook it, but if ten people tell you you're a donkey, buy yourself a saddle."<br /><br />So if there are stacks of individuals who say the equal factor about a person or a program, you have to pay word and center your choices on that. With all this facts in thoughts, do you sense you may proper away be able to spot a legitimate possibility?<br /><br />Well lets see... This is a software that I am worried with. I would love you to test up on it and see what you find. If it meets the necessities, then you definately've just found the treatment in your needs.<br />However if you still want to search further, then have a look through my overview internet site. I actually have a group of wealth building applications reviewed. Take care and please do no longer link up with any program with out doing all of your take a look at first.<br /><br />See more read<br />latestdatabase.com/ghana-phone-number-list http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1590826155/1#1 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1590826155/1#1 Tue, 9 Jun 2020 19:57:55 GMT Hi there<br /><br />My name is Mark. My 12 year old daughter, Luca, is 11 years post-op. I haven’t been here for some time but the chaos period and earlier years are quite well documented on this platform.<br /><br />We’re in the Cape<br /><br />Cheers http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1582946325/0#0 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1582946325/0#0 Sat, 29 Feb 2020 03:18:45 GMT Looking to connect with people who have Moyamoya to share knowledge and experiences. Thanks in advance http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1522804879/0#0 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1522804879/0#0 Wed, 4 Apr 2018 01:21:19 GMT Looking to connect w/ meetings/events/ support groups in the Columbus Ohio area. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1521117738/0#0 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1521117738/0#0 Thu, 15 Mar 2018 12:42:18 GMT Inviting all Midwest Moyamoya families to attend an upcoming support group meeting on Sunday, April 8, from 2-4 p.m. in Shawnee, KS. Here is the event information on Facebook:<br />https://www.facebook.com/events/174320626706141/?ti=icl<br /><br />A chance for Midwest Moyamoya warriors and family members to come together and help support one another. This will be the first of hopefully many more support group meetings. Items to be discussed but not limited to the following:<br /><br />- Introductions/getting to know one another. <br />- Topics/concerns that a support group can help with as we move forward. <br />- Plans for World Moyamoya Day in May 6?<br />- Q&A/Next Steps <br /><br />Water and light snacks will be provided. All ages welcome. A big thank you to Grace Point for the room donation! Please RSVP so we know how many people to expect.<br /><br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1246903423/1#1 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1246903423/1#1 Tue, 13 Feb 2018 18:48:33 GMT Hi PatriciaPam,<br /><br />If you are still on here, I was just diagnosed and am interested in hearing about your experience with this disease.<br /><br />Thanks.<br /><br />Aimee http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1503935222/0#0 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1503935222/0#0 Mon, 28 Aug 2017 15:47:02 GMT Hi everyone,<br />there will be a gathering for Moyamoya patients and relatives on 4th of November in Germany. <br />This will be the third meeting held in the Alfried-Krupp Hospital .<br />You can find a flyer with all details here:<br />https://www.krupp-krankenhaus.de/uploads/pics/3717-drittes-infoforum-moymoya-krupp-kh.pdf<br />Unfortunately it is only in German, but this might be still of interest for some readers of the forum.<br />Jan<br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1369179459/5#5 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1369179459/5#5 Fri, 14 Oct 2016 10:50:15 GMT Peter from Laurieton NSW - the other half [60 y.o.] had 3 TIAs in mid June and had a stent placed in inner left carotid at John Hunter Hospital Newcastle. 2 months later she had another 2 TIAs and went straight back to John Hunter where her neurological interventionist [Dr Ferdinand Miteff] arranged for a neurovascular surgeon [Dr Mitch Hansen] to do a STA-MCA bypass [his 13th]. Pretty good outcome so far, however it's only been two weeks since the surgery.<br /><br />Depression seems to be the next hurdle to overcome - hers, not mine, as she is uncertain as to her future .... so I need to devise a plan to get her to the local GP under some other pretext. Needless to say she's had her fill of angiograms and blood letting to last her a while. <br /><br />We both can't speak more highly of Dr Miteff and his team [including Dr Hansen]. Dr Miteff met us at 1.30am at the hospital on a Sunday morning to make sure we got past the triage nurse at ER and were admitted into the correct ward. He's got my vote for Australian of the Year. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1317320188/6#6 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1317320188/6#6 Fri, 6 May 2016 13:36:17 GMT Great great place unique http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1453156627/0#0 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1453156627/0#0 Mon, 18 Jan 2016 22:37:07 GMT Anyone from Toronto, Canada?? <br /><br />Hello, <br />I'm a 37yr old, and was diagnosed with MMD; was wondering if there is anyone else with this condition in Toronto, Ontario, Canada? <br /><br />I'd love to meet anyone to share experience's, or attend any support group(s) for this condition, here in the city. <img src="http://www.moyamoya.com/public_html/yabbfiles/Templates/Forum/default/smiley.gif" border="0" alt="Smiley" title="Smiley" /> <img src="http://www.moyamoya.com/public_html/yabbfiles/Templates/Forum/default/smiley.gif" border="0" alt="Smiley" title="Smiley" /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1246487524/4#4 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1246487524/4#4 Tue, 29 Sep 2015 21:10:57 GMT Hello,<br /><br />My daughter, who is 17, was diagnosed in March of this year and had surgery in April.  We live in Loveland, CO, and were wondering if a support group was ever formed for the Denver area? http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1403740612/0#0 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1403740612/0#0 Wed, 25 Jun 2014 23:56:52 GMT So Cal, you're invited... to our First Annual Moyamoya Life Celebrtion!  <br /><br />SAVE THE DATE: Sat., 8/23 from 5pm - 7pm<br />Fowler Museum at UCLA<br />-Meet other Moyamoya Survivors<br />-Learn from MMD Experts<br />-Enjoy refreshments<br />**Free Event**<br />RSVP: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to <a href="http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?action=login;sesredir=num~1403740612"><img src="http://www.moyamoya.com/public_html/yabbfiles/Buttons/English/login.png" alt="Login" title="Login" border="0" /></a> or <a href="http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?action=register"><img src="http://www.moyamoya.com/public_html/yabbfiles/Buttons/English/register.png" alt="Register" title="Register" border="0" /></a> or call me at (562) 805-7881 by 8/8 please.<br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1159554176/10#10 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1159554176/10#10 Wed, 25 Jun 2014 23:55:29 GMT So Cal, you're invited... to our First Annual Moyamoya Life Celebrtion!  <br /><br />SAVE THE DATE: Sat., 8/23 from 5pm - 7pm<br />Fowler Museum at UCLA<br />-Meet other Moyamoya Survivors<br />-Learn from MMD Experts<br />-Enjoy refreshments<br />**Free Event**<br />RSVP: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to <a href="http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?action=login;sesredir=num~1159554176"><img src="http://www.moyamoya.com/public_html/yabbfiles/Buttons/English/login.png" alt="Login" title="Login" border="0" /></a> or <a href="http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?action=register"><img src="http://www.moyamoya.com/public_html/yabbfiles/Buttons/English/register.png" alt="Register" title="Register" border="0" /></a> or call me at (562) 805-7881 by 8/8 please.<br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1129903573/44#44 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1129903573/44#44 Mon, 28 Apr 2014 18:07:43 GMT Wishing you and your husband all the best as he has surgery this week!<br /><br />There is a community of moyamoya patients in your area. They are planning a get-together in Missouri for 5/10 (to celebrate/recognize World Moyamoya Day). It may be too close to his surgery date, but if you are on Facebook, and go to the World Moyamoya Day - May 6th page, you can keep up with future gatherings.<br /><br />Please let us know how he is doing!<br /><br />Warmly,<br />Jill<br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1374187750/1#1 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1374187750/1#1 Fri, 19 Jul 2013 14:43:54 GMT Progression rates can be different from patient to patient. I would recommend to not make hasty decisions, but not to sweep it under the carpet, either. Try to educate yourself as best as possible, then move forward with your decisions. Having a doctor with a lot of moyamoya experience is high on the list of things to ask about. Ideally, you want someone who can tell you about their patients' long term outcomes.<br /><br />By any chance, are you on Facebook? There is a decent size group of people on the World Moyamoya Day - May 6th page. People are being encouraged to connect with others in their geographical area, for support and awareness purposes. If you are on Facebook, you might give it a try. Good luck!<br /><br />Jill http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1358826374/3#3 Moyamoya.com Forum/2012 Moyamoya.com Gathering http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1358826374/3#3 Thu, 13 Jun 2013 17:08:59 GMT Would very much like to go in 2014. Getting very nervous about my daughters MRI/MRA scans July 3rd 2013. She is 3 and last year her cath showed narrowing starting in the back of her head. Any advise on how to deal with the fear.  <img src="http://www.moyamoya.com/public_html/yabbfiles/Templates/Forum/default/undecided.gif" border="0" alt="Undecided" title="Undecided" /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1343195258/8#8 Moyamoya.com Forum/2012 Moyamoya.com Gathering http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1343195258/8#8 Tue, 29 Jan 2013 22:11:17 GMT I think New Orleans would be a great choice. <img src="http://www.moyamoya.com/public_html/yabbfiles/Templates/Forum/default/smiley.gif" border="0" alt="Smiley" title="Smiley" /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1359375462/0#0 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1359375462/0#0 Mon, 28 Jan 2013 12:17:42 GMT Hi my name is debbie and my husband was just told he has Moya Moya , I would love to find support groups for myself to go to in ct . <img src="http://www.moyamoya.com/public_html/yabbfiles/Templates/Forum/default/shocked.gif" border="0" alt="Shocked" title="Shocked" /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1337797972/1#1 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1337797972/1#1 Mon, 19 Nov 2012 01:56:11 GMT MM in Houston area<br /><br /> I'm so sorry to hear you are going thru this, but there can be pretty good recovery.  Unfortunately, with any stroke or damage to the brain, recovery depends on many things and is very different for probably everyone.<br />My son has MM and was dx'd after a stroke 15 1/2 yrs ago.  He had educational setbacks b/c of the effect on his speech, right hand and the language center, but I am happy to report that he had a fairly normal childhood and is now a sophmore at TX A&M, Galveston.  He also earned his Eagle rank. There was lots of therapy and tutoring but he perservered. He was always a sport nut so the physical activity helped his recovery. Most people are surprised to learn of his history as it is not obvious now.<br />We have met many adults with MM thru this website.  Most seem to be doing quite well. Very few are having difficulty.  But all will agree it takes a lot of work.  The first 6-12 months are crucial, but there can still be improvement beyond that.<br />If you haven't seen them, I hope you will watch the videos of Dr. Diane Miliwicz's presentation on the genetic research being done on MM right here in Houston. Just search her name on YouTube or you can find the link in this website.  there are 5 videos each ~15-20 minutes long so you don't have to sit thru the entire thing at once.  Their work is very encouraging. <br />Feel free to email me at srmac22@gmail.com if you have any questions    - I am happy to share anything I know or our experiences.<br />God bless you both - whatever comes, He will take the best care of you because you are His children, <br /><br /><br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1340817628/1#1 Moyamoya.com Forum/2012 Moyamoya.com Gathering http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1340817628/1#1 Wed, 27 Jun 2012 17:43:54 GMT YES!  I was able to get all of the videos online late last night.<br /><br />Videos are located here: http://www.moyamoya.com/videos.html<br /><br />Enjoy!! http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1340203790/0#0 Moyamoya.com Forum/2012 Moyamoya.com Gathering http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1340203790/0#0 Wed, 20 Jun 2012 14:49:50 GMT Hello,<br /><br />Our family had planned to attend the gathering in KC this year, but due to a death in our family, our plans have changed.  Therefore, if there is anyone out there who is interested in a last minute registration, please contact me asap.  Calling on my cell would probably be best...the number is 317-627-3054.<br /><br />Thank you!<br /><br />Jennifer Berry http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1340104888/0#0 Moyamoya.com Forum/2012 Moyamoya.com Gathering http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1340104888/0#0 Tue, 19 Jun 2012 11:21:28 GMT Here is the link to the LIVE feed page for Saturday, June 23, 2012. Dr. Dianna Milewicz's presentation will be stream live at 10am CDT at the following page: http://www.moyamoya.com/ustreamkc.html<br /><br />Hope to see you there!<br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1312755383/23#23 Moyamoya.com Forum/2012 Moyamoya.com Gathering http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1312755383/23#23 Tue, 19 Jun 2012 11:20:16 GMT <b><a href="http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1312755383/22#22">Amit wrote</a> on Jun 12^th, 2012 at 1:19am:</b><br /><div>DJ,<br />Is Dr. Scott planning to be there too? <br />amit </div><br />No, Dr. Scott will not be there this year.  Dr. Dianna Milewicz will be the only speaker. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1336012435/1#1 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1336012435/1#1 Wed, 13 Jun 2012 01:47:30 GMT Hi there! <br /><br />I am sorry to hear you have been diagnosed with this disease, but then again, you are lucky the finally found it! Can I ask what problems you were having?<br /><br />I don't have much info for you since it is my son that has the disease and he is only 12. Treatment is different for children than adults. He was diagnosed last April after suffering a major stroke, had surgery in May, went through many complications but came through with flying colors! We just celebrated his 1 yr post surgery Anniversary! lol<br /><br />You should move this post or make a new one in the Moyamoya Related Information and Support section, under Moyamoya Related Topics. you will receive many more responses and be able to get more information. <br /><br />Good luck and <br />best wishes to you! http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1241110726/7#7 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1241110726/7#7 Tue, 22 May 2012 15:08:47 GMT Hello,<br />This is my first post here... My wife was diagnosed with moyamoya roughly a month ago. At the moment she is still recoving from the stroke.<br />We live in Houston (Kingwood).<br /><br />This site has already given us great info and we plan to contiune to visit this site. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1336390323/1#1 Moyamoya.com Forum/2012 Moyamoya.com Gathering http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1336390323/1#1 Tue, 15 May 2012 22:38:41 GMT Less than a week left to get registered folks.  This is going to be the best Gathering yet!<br /><br />Click the link below for all of the information...<br /><br />http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1312755383<br /><br />DJ http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1331864060/4#4 Moyamoya.com Forum/2012 Moyamoya.com Gathering http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1331864060/4#4 Sat, 12 May 2012 03:56:04 GMT I reserved a 40 passenger bus for us today!  Bus will pick us up at the Lodge, drop us off at the game, then bring us back.  If you would like to join us, follow this link: http://www.moyamoya.com/khxc/index.php?app=ccp0&ns=prodshow&ref=baseball<br /><br />See you soon!<br /><br />DJ<br /><br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1334500253/0#0 Moyamoya.com Forum/2012 Moyamoya.com Gathering http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1334500253/0#0 Sun, 15 Apr 2012 14:30:53 GMT People have asked about additional hotels in the area in case the Great Wolf Lodge ran out of rooms.  Below is a map of some hotels near the Lodge and a link to Google with all of the information:<br /><br />http://maps.google.com/maps?hl=en&rls=com.microsoft:en-us&rlz=1I7GGLD_en&q=hotels+near+great+wolf+lodge,+kc&bav=on.2,or.r_gc.r_pw.r_qf.,cf.osb&biw=1280&bih=884&wrapid=tlif133449844664910&um=1&ie=UTF-8&sa=N&tab=wl<br /><br /><br />Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to <a href="http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?action=login;sesredir=num~1334500253"><img src="http://www.moyamoya.com/public_html/yabbfiles/Buttons/English/login.png" alt="Login" title="Login" border="0" /></a> or <a href="http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?action=register"><img src="http://www.moyamoya.com/public_html/yabbfiles/Buttons/English/register.png" alt="Register" title="Register" border="0" /></a><br /><br /><br /><br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1325823430/0#0 Moyamoya.com Forum/2012 Moyamoya.com Gathering http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1325823430/0#0 Fri, 6 Jan 2012 04:17:10 GMT I am VERY excited to announce that Dr. Dianna Milewicz and her team will be joining us again this year in Kansas City!  You may remember that her and her team visited with us in San Antonio in 2007 when they had just started their research.<br /><br />Dr. Milewicz and her team have made some very important discoveries recently including information about possible medical therapies to prevent or reverse the disease!  That's HUGE!!  Here is a quick highlight of this exciting news:<br /><br /><i>"Moyamoya disease can occur in more than one member in a family, suggesting that alterations in genes causing Moyamoya disease may be passed through families.  Dr. Dianna Milewicz, Director of the Division of Medical Genetics at the University of Texas Health Science Center at Houston, will discuss the genetic predisposition to Moyamoya disease and talk about the three genes that have been identified to cause this condition.  She will address what genetic testing should be done in patients with Moyamoya disease and what the results of this testing means for other family members and their risk to develop Moyamoya disease.  Finally, one recently identified gene is beginning to provide information as to the cause of Moyamoya disease and provide information about possible medical therapies to prevent or reverse the disease."</i><br /><br />Please make plans to join us June 21-24, 2012 in Kansas City for this year's Moyamoya.com Gathering and share in this incredibly exciting information!<br /><br />More information on the Gathering can be found by following this link: http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1312755383<br /><br />See you there!!<br /><br />DJ<br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1253554827/1#1 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1253554827/1#1 Tue, 4 Oct 2011 04:12:25 GMT Hi Ted,<br /><br />I saw your post about meeting up in the los angeles area.  I live in LA (los feliz) and would love to meet you and your wife.  I had my surgery at stanford in 2005 and have been feeling great ever since (well, as good as one can feel with moyamoya).  please feel free to call me if you guys want to get together before the operation.  I'm sure your wife and you are scared and have a lot of questions.  I know I would have liked to have met someone before my operation.  310-694-1707 or email at moeblair@yahoo.com.<br /><br />Hope all is well,<br />Monica http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1317320176/0#0 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1317320176/0#0 Thu, 29 Sep 2011 18:16:16 GMT We're finally going to Hawaii.<br />Between Oct. 3rd and Oct 30th.<br />Will be in Lanikai beach area in Oahu between the 11th  to the 19th.<br />Making other plans which might include other islands.<br />Anyone care to meet and visit?<br />Linda and Jack http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1317311610/0#0 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1317311610/0#0 Thu, 29 Sep 2011 15:53:30 GMT I was diagnosed in 2005 at age 41. It's really interesting to hear so many older people getting dianosed now. Boy, the radiologists and doctors didn't know so much years ago. I remember when I was tested, the radiologists huddled together, and stupidly thinking I couldn't hear them said, "I wonder if she knows she has moyamoya disease? She's old for surgery." Ofcourse now I know that isn't so uncommon anymore. But I haven't been on any websites, or even been able to go to a dr. believe it or not, in a few years. Because of money problems. I get a family dr. to give me my seizure meds, and my surgeon WAS sending me for the special scan once a year, and giving me my results once a year. But I'm sure it won't be anymore, because we had to go bankrupt. My husband is 60% deaf, and I have been trying to explain to him how I can't just go to any dr. to read those scans or order them. He's not even concerned over having put the bills from my surgeon on our bankruptcy. It's like he just feels like I got two brain surgeries so I'm cured. I know that's not necessarily the case. I'm worried about it. I want to live a long life.. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1185559955/15#15 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1185559955/15#15 Fri, 23 Sep 2011 01:19:07 GMT I am not sure how often people check these posts,but I live in lancaster Pa, and have lived in philly and warminster. I was wondering how you all/kids are doing and where you ended up having surgery. I have sent mt scans to stanford and am waiting to hear back from them. I saw my neurologist here in lancaster who thinks I should have a stent placed, so I need to show him why that is not a good idea....  any info you can share about philly docs would be appreciated <br />thanks kelly<br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1312345030/0#0 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1312345030/0#0 Wed, 3 Aug 2011 04:17:10 GMT Anyone from Humboldt County, California area wanting to meet and talk?<br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1143052981/11#11 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1143052981/11#11 Tue, 2 Aug 2011 02:18:52 GMT <br />Hi Cory,  We moved to Tampa fro Pensacola.  We lived out in Grand Lagoon near Perdido Key for 14 yers.  Jeffrey, are you still in Australia?  It says you are relocating from Australia..Which area are you from. Visited Perth and Syndey...side trip to Yancep  Absolutely loved it!<br />Donna http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1285908939/4#4 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1285908939/4#4 Sun, 31 Jul 2011 02:59:21 GMT Would anyone from Indiana would like to have a get together maybe sometime after the new year?  I was thinking maybe Caribbean Cove.  I would see about getting a group rate if I could get a number ASAP.  E-mail me at abbeharpp@yahoo.com<br /><br />Abbe http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1222394210/1#1 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1222394210/1#1 Tue, 30 Nov 2010 06:36:43 GMT hi...good day..have fun..\<br /><br /><br /><br />Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to <a href="http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?action=login;sesredir=num~1222394210"><img src="http://www.moyamoya.com/public_html/yabbfiles/Buttons/English/login.png" alt="Login" title="Login" border="0" /></a> or <a href="http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?action=register"><img src="http://www.moyamoya.com/public_html/yabbfiles/Buttons/English/register.png" alt="Register" title="Register" border="0" /></a> - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to <a href="http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?action=login;sesredir=num~1222394210"><img src="http://www.moyamoya.com/public_html/yabbfiles/Buttons/English/login.png" alt="Login" title="Login" border="0" /></a> or <a href="http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?action=register"><img src="http://www.moyamoya.com/public_html/yabbfiles/Buttons/English/register.png" alt="Register" title="Register" border="0" /></a> - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to <a href="http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?action=login;sesredir=num~1222394210"><img src="http://www.moyamoya.com/public_html/yabbfiles/Buttons/English/login.png" alt="Login" title="Login" border="0" /></a> or <a href="http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?action=register"><img src="http://www.moyamoya.com/public_html/yabbfiles/Buttons/English/register.png" alt="Register" title="Register" border="0" /></a> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1233801552/4#4 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1233801552/4#4 Thu, 12 Aug 2010 03:59:31 GMT We liked Dr. Scott and agreed with his suggestion to repeat the mri/mra.  So we did and now we are waiting to here the results in the morning.  VERY nervous, can't sleep.  Want to know but its been so nice not worring about it for a little bit.  Time to face the music I guess.  Thanks for listening.  Jeannine http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1275342907/2#2 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1275342907/2#2 Thu, 3 Jun 2010 13:15:34 GMT Tracie,<br /><br />I don't have any time line yet. Let's see how many people response, then maybe we can figure something out together.<br /><br />LuckyMe http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1274543799/2#2 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1274543799/2#2 Tue, 1 Jun 2010 22:41:17 GMT Dave - <br /><br />I live a little further away - just wanted to let you know to watch the 2011 Reunion thread...I know it's a year away - but it's going to be in Philadelphia and there will most likely be other kids there!  <br /><br />http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?board=2011reunion<br /><br />-Shari http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1136867796/11#11 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1136867796/11#11 Sun, 7 Feb 2010 23:56:51 GMT sorry correction i didnt come here in 2001 jacob was diagnosed in 2001 i didnt find this sight till afew years later there was nothing on the web about moyamoya i just kept trying out of desperation and found this sight sorry dont want to get it mixed up http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1221888436/8#8 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1221888436/8#8 Fri, 11 Dec 2009 17:42:27 GMT I just posted a message about my 32 year old son and neglected to say we live in Midland http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1228612382/36#36 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1228612382/36#36 Mon, 15 Jun 2009 23:42:42 GMT I attended the picnic. It was truly amazing. I can't tell you how wonderful it is to meet other people with moyamoya. It really creates a bond that lasts a lifetime.<br /><br />Reagan http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1241583123/2#2 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1241583123/2#2 Thu, 7 May 2009 07:13:34 GMT Hi Hillary<br /><br />Very kind of you to include everyone here. Unfortunately Luca won't make it due to a small distance issue but, like Linda and Jack, we'll be long distance celebrating! <br /><br />Well done to Holly.<br /><br />Mark (Luca's Dad) http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1177024536/7#7 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1177024536/7#7 Fri, 20 Feb 2009 23:15:33 GMT I sure hope all Minnesota MMers will be able to join us for our lil get together in Omaha this summer!!  Please let me know!  <img src="http://www.moyamoya.com/public_html/yabbfiles/Templates/Forum/default/smiley.gif" border="0" alt="Smiley" title="Smiley" /><br />Michele http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1229031706/5#5 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1229031706/5#5 Fri, 20 Feb 2009 00:24:55 GMT Hi, guys!  Depending on where and when, we might go!  I'm not sure we could do VA - kinda too far to drive from NH, and the budget won't allow for flying right now - but let us know where you decide, and maybe we'll join you!  The girls would love to see you!!<br />Kristen http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1232103532/0#0 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1232103532/0#0 Fri, 16 Jan 2009 10:58:52 GMT Hello,<br /><br />I'm going back to Stanford for my annual check up from the 24th of February to the 2nd of March.<br /><br />Let me know if anyone wants to meet up.<br /><br />Monica http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1220027541/2#2 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1220027541/2#2 Sat, 22 Nov 2008 01:45:01 GMT hello and thank you we actually met with a surgeon today in halifax  nova scotia that trained under dr.stienburg in california...he is going to contact him about the complexity of daughters  illnesses.. and her many EDAS  surguries and post op strokes.. continuing TIA's.. amazing he said he would love to send her to stanford ,,we are now waiting on an angio ... my daughter is almost 19 to soon to transition to adult world which is scarey..thank you for replying... plz keep in contact<br /><br />           thanks heather http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1223230673/2#2 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1223230673/2#2 Mon, 6 Oct 2008 23:33:04 GMT You have my prayers during your son's surgery as well as those of many, many others who post to this website.<br />Best wishes,<br />Kim http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1220824886/7#7 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1220824886/7#7 Tue, 30 Sep 2008 16:13:57 GMT Hello Hawaii!!!<br /><br />We're still getting organized about gettin g to Hawaii. <br />Coordinating with Kim as well.<br />Thanks for your private message re: travel.<br /><br />Looking forward to meeting you and all of the other Island mm'ers ..<br /><br />And enjoying your part of the ocean. The Northern Calif. ocean is lovely but I crave warmmmmmmmmmmm.<br /><br />More later,<br /><br />Hope to meet more of you mm'ers.<br /><br />We're thinking late Jan or Feb.<br /><br />Thanks for your great work Shan!<br /><br />Linda