Click this link to read a post I like on the moyamoya.com message board...

ntrlpwr Junior Poster Offline have faith, the Lord is my savior dx 2006 Posts: 62 Pearl City, USA, usa, HI, Hawaii Gender:	Re: Genetic Research Study - Participation Needed! Reply #25 - Apr 24^th, 2007 at 7:59pm 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.
Back to top	aloha,&&Brandie IP Logged

Linda

New Poster

Offline

Posts: 16
Knightstown, USA, usa, 388, 144, IN, Indiana
Gender: female

Re: Genetic Research Study - Participation Needed!
Reply #26 - Apr 26^th, 2007 at 5:14pm

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 Shocked

8)

Back to top

IP Logged

pmteet New Poster Offline I love YaBB 1G - SP1! Posts: 17 st. louis, USA, MO, Missouri Gender:	Re: Genetic Research Study - Participation Needed! Reply #27 - Apr 28^th, 2007 at 5:11pm 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
Back to top	IP Logged

Linda

New Poster

Offline

Posts: 16
Knightstown, USA, usa, 388, 144, IN, Indiana
Gender: female

Re: Genetic Research Study - Participation Needed!
Reply #28 - May 2^nd, 2007 at 10:05am

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

Back to top

IP Logged

LA Senior Poster Offline Moyamoya survivor since 1999! Posts: 334 Kneeland, USA, 15, 113, C Gender:	Re: Genetic Research Study - Participation Needed! Reply #29 - May 2^nd, 2007 at 12:32pm This is so exciting! A chance to make a difference. I'm signed up! LA (Linda A)
Back to top	Linda (LA) IP Logged

sjbourg

New Poster

Offline

Posts: 3
Houston, USA, TX, Texas
Gender: male

Re: Genetic Research Study - Participation Needed!
Reply #30 - May 2^nd, 2007 at 3:11pm

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

Back to top

IP Logged

elaine

Experienced Poster

Offline

I love YaBB 1G - SP1!

Posts: 200
Sanford, USA, usa, 465, 285, FL, Florida
Gender: female

Re: Genetic Research Study - Participation Needed!
Reply #31 - May 8^th, 2007 at 11:51am

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

Back to top

Elaine

IP Logged

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 #32 - May 10^th, 2007 at 11:18am 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
Back to top	IP Logged

Click Here to visit the Moyamoya.com Facebook page!

sjbourg

New Poster

Offline

Posts: 3
Houston, USA, TX, Texas
Gender: male

Re: Genetic Research Study - Participation Needed!
Reply #33 - Jun 15^th, 2007 at 12:01pm

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

Back to top

IP Logged

itsme

Experienced Poster

Offline

I love YaBB 1G - SP1!

Posts: 125
aliso viejo, USA, CA, California

Re: Genetic Research Study - Participation Needed!
Reply #34 - Jun 15^th, 2007 at 2:55pm

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.

Back to top

IP Logged

STrantas

MM.com Benefactor

Offline

MoyaMoya Survivor Since
2003

Posts: 1154
Philadelphia, USA, usa, 490, 122, PA, Pennsylvania
Gender: female

Re: Genetic Research Study - Participation Needed!
Reply #35 - Jun 18^th, 2007 at 7:22pm

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

Back to top

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

IP Logged

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 #36 - Jun 30^th, 2007 at 8:41pm 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.
Back to top	Yesterday is past, tomorrow is future, today is the gift, that why we call it present. IP Logged

mjohng New Poster Offline We'll get through this! Posts: 5 Cerritos, USA, CA, California Gender:	Re: Genetic Research Study - Participation Needed! Reply #37 - Apr 8^th, 2008 at 7:04pm I noticed the last posting on this subject is already coming up on almost a year. Any new updates?
Back to top	Mansik IP Logged

Becky Old-Time Poster Offline Stroke10/03, Diagnosed6/04, Unilateral Surgery9/04 Posts: 532 Minneapolis, USA, usa, 303, 84, MN, Minnesota Gender:	Re: Genetic Research Study - Participation Needed! Reply #38 - Apr 11^th, 2008 at 6:29pm there is a post called "GENETIC TEST RESULTS! Oh Boya! " that has some results posted. becky
Back to top	What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar. STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic IP Logged

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