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Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › Genetic Research Study - Participation Needed!

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Genetic Research Study - Participation Needed! (Read 16964 times)

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Been there, done that...

Posts: 721
Wichita, KS
Gender: male

Genetic Research Study - Participation Needed!
Apr 18^th, 2007 at 8:14pm

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

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

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

« Last Edit: Apr 20^th, 2007 at 8:05pm by DJ »

Adversity does not build character... it reveals it... I help my neighbor and my neighbor helps someone else. Life is a wonderful circle!

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babyblue Senior Poster Offline Diagnosed 2003 Posts: 306 kennesaw, USA, usa, 417, 219, GA, Georgia Gender:	Re: Genetic Research Study - Participation Needed! Reply #1 - Apr 18^th, 2007 at 10:36pm Dj, This is very exciting! I will contact the people for the research asap. Christy
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triciab

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My daughter, Amanda, has
moyamoya.

Posts: 28
Hanmer, Canada, canada, 381, 398, ON, Ontario
Gender: female

Re: Genetic Research Study - Participation Needed!
Reply #2 - Apr 18^th, 2007 at 10:39pm

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

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pmteet New Poster Offline I love YaBB 1G - SP1! Posts: 17 st. louis, USA, MO, Missouri Gender:	Re: Genetic Research Study - Participation Needed! Reply #3 - Apr 18^th, 2007 at 10:53pm I can not open it??
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triciab New Poster Offline My daughter, Amanda, has moyamoya. Posts: 28 Hanmer, Canada, canada, 381, 398, ON, Ontario Gender:	Re: Genetic Research Study - Participation Needed! Reply #4 - Apr 18^th, 2007 at 11:00pm Hello again DJ: I cannot open the file either. I will try from work tomorrow and hopefully it works there. Tricia
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ExtremeLife1986 Junior Poster Offline Live For Today !!!! Posts: 87 Boynton Beach, USA, FL, Florida Gender:	Re: Genetic Research Study - Participation Needed! Reply #5 - Apr 18^th, 2007 at 11:13pm 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.
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STrantas MM.com Benefactor Offline MoyaMoya Survivor Since 2003 Posts: 1154 Philadelphia, USA, usa, 490, 122, PA, Pennsylvania Gender:	Re: Genetic Research Study - Participation Needed! Reply #6 - Apr 19^th, 2007 at 9:31am 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
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elaine Experienced Poster Offline I love YaBB 1G - SP1! Posts: 200 Sanford, USA, usa, 465, 285, FL, Florida Gender:	Re: Genetic Research Study - Participation Needed! Reply #7 - Apr 19^th, 2007 at 10:17am I couldn't open either of the sites..........I would like to be able to partisipate in a study too......
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mg12061 Old-Time Poster Offline Posts: 946 Albany, USA, usa, 492, 84, NY, New_York Gender:	Re: Genetic Research Study - Participation Needed! Reply #8 - Apr 19^th, 2007 at 10:43am 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
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mg12061 Old-Time Poster Offline Posts: 946 Albany, USA, usa, 492, 84, NY, New_York Gender:	Re: Genetic Research Study - Participation Needed! Reply #9 - 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
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Chelsie Experienced Poster Offline Posts: 127 Columbus, USA, usa, 418, 135, OH, Ohio Gender:	Re: Genetic Research Study - Participation Needed! Reply #10 - Apr 19^th, 2007 at 10:48am 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
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pattil647 Junior Poster Offline Mom of Moyamoya Survivor Posts: 70 Langhorne, USA, usa, 484, 119, PA, Pennsylvania Gender:	Re: Genetic Research Study - Participation Needed! Reply #11 - Apr 19^th, 2007 at 11:22am 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!
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YaBB Administrator

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Been there, done that...

Posts: 721
Wichita, KS
Gender: male

Re: Genetic Research Study - Participation Needed!
Reply #12 - Apr 19^th, 2007 at 11:36am

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

Adversity does not build character... it reveals it... I help my neighbor and my neighbor helps someone else. Life is a wonderful circle!

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megans_parents

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stuarts draft, USA, usa, 465, 155, VA, Virginia
Gender: female

Re: Genetic Research Study - Participation Needed!
Reply #13 - Apr 19^th, 2007 at 12:44pm

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

The smarter I become, the dumber I know I am.

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mattsmom Junior Poster Offline My son, Matthew, has moyamoya. Posts: 59 Albuquerque, USA, usa, 180, 215, NM, New_Mexico Gender:	Re: Genetic Research Study - Participation Needed! Reply #14 - Apr 19^th, 2007 at 1:42pm 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
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mg12061

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Albany, USA, usa, 492, 84, NY, New_York
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Re: Genetic Research Study - Participation Needed!
Reply #15 - Apr 19^th, 2007 at 2:23pm

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

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lotsofkids

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Moyamoya...Oh boya boya!

Posts: 333
Akron, USA, usa, 421, 123, OH, Ohio
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Re: Genetic Research Study - Participation Needed!
Reply #16 - Apr 19^th, 2007 at 3:52pm

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 : )

Hmmm....seems I'm kinda "special" LOL

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srkm5482

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Sugar Land, TX
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Re: Genetic Research Study - Participation Needed!
Reply #17 - Apr 19^th, 2007 at 4:43pm

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

Sue (Kyle's mom)

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mark_r New Poster Offline I love YaBB 1G - SP1! Posts: 9 cato, USA, NY, New_York	Re: Genetic Research Study - Participation Needed! Reply #18 - Apr 19^th, 2007 at 8:58pm 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
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Skay Junior Poster Offline I love YaBB 1G - SP1! Posts: 87 Evansdale, USA, usa, 323, 119, IA, Iowa Gender:	Re: Genetic Research Study - Participation Needed! Reply #19 - Apr 19^th, 2007 at 10:13pm 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
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mitzeeboo New Poster Offline Diagnosed March 2002 Posts: 1 Mount Holly, USA, usa, 451, 190, NC, North_Carolina Gender:	Re: Genetic Research Study - Participation Needed! Reply #20 - Apr 19^th, 2007 at 11:29pm 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
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Nic

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Wellingon, New_Zealand, australia, 519, 324
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Re: Genetic Research Study - Participation Needed!
Reply #21 - Apr 20^th, 2007 at 1:21am

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

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STrantas

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MoyaMoya Survivor Since
2003

Posts: 1154
Philadelphia, USA, usa, 490, 122, PA, Pennsylvania
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Re: Genetic Research Study - Participation Needed!
Reply #22 - Apr 20^th, 2007 at 9:28am

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

A smile is contagious...start an epidemic!
Dr. Scott did my surgeries - 12/29/03 and 1/5/04

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sjbourg

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Re: Genetic Research Study - Participation Needed!
Reply #23 - Apr 20^th, 2007 at 9:48am

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

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moody Experienced Poster Offline In all the thing I lost I miss my mind the most. Posts: 207 richmond, USA, VA, Virginia Gender:	Re: Genetic Research Study - Participation Needed! Reply #24 - Apr 24^th, 2007 at 7:54am Thanks DJ, this is a very excited news, I will contact them to be participate for the research. Kieu
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