my 15 year old daughter has been diagnoised with marfan syndrome. so far I have not found anyone in our state that has this syndrome. how can I find someone?...
Hello, If you go to The National Marfan Foundation site and click on support services, then local contacts, then on your state you may find someone. Also check...
HI, MY NAME IS VICKIE, I HAVE A 10 YR OLD SON WITH MARF, BUT WAS WONDERING IF YOU WERE LOOKING FOR OTHER MARFS IN THE AREA SO YOUR DAUGHTER WOULD HAVE SOMEONE...
Hi Everyone, I am still without a computer, and missing everyone. For those of you that have known me for a while, just a little update on my son. He just got...
HI LARIE, THIS IS VICKIE. DR DIETZ PUT MY SON ON BOTH. HE WAS ON ATENOLOL 25MG AM AND PM, BUT NOW HE IS ON LOSARTIN 25 AND ATENOLOL 25 IN THE AM AND LOSARTIN...
Hi Julie, I'm new to the group too! I have a 2 year old son with MFS. I lived in Milwaukee for 5 years but am now located in the Upper Penninsula. I attended...
LARIE, HE HASN'T SAID ANYTHING TO ME. HE SEEMS FINE, HE (UNLIKE MY DAUGHTER) IS NOT A COMPLAINER. HE'S ONE THAT IF HE SAYS SOMETHING HURTS OR HE DOESN'T FEEL...
Hi Vickie, I understand, my son is alot like that also. He seems to have a high pain tolerance. When he was two he had an ear drum rupture because he had a...
HEY LARIE, MY SON WOULD SPIKE A 105. FEVER BEFORE I KNEW ANYTHING WHEN HE WAS SMALL, SO I KNOW WHAT YOU MEAN. MAYBE GOD MADE THEM THAT WAY DUE TO ALL THIS...
Children's Memorial Hospital ( Chicago ) is now a clinical trial location. We still need more volunteers for this event to be successful nationwide. If you are...
So the NMF Convention was in Boston year before last. Last year it was in San Francisco. This year its in Boston again. What about us folks in the Midwest? So...
In 2006, it was in Philadelphia. Wasn't it in St. Louis not too long ago? I live in Boston and this is the first time in 5 years it's been here. Although I...
So Lee, now you got me thinking.... haha. Where have all the conferences been held? Here's what I found... 2000 Omaha 2001 Seattle 2002 Baltimore 2003 Chicago ...
I have only been part of this group for a little over 2 years, but I thought it was in Pennsylvania before San Francisco. Glad I didn't try to go then, I would...
I live in the same darn house I grew up in. I get excited everytime we go somewhere other than my little hick town. I have got to get to the conference this...
That is so awesome! I want to go, my kids want to go. I have got to start checking to see what Boston has. It will be so great to actually get to see other...
I wish I had that kind of influence Lee. Last years conference was in Palo Alto California and the year before it was in Philadephia, PA. This is our first...
I don't have all the details that go into having a conference but from discussions with NMF staff and the board of directors, here are a few things: They try...
Hi guys my name is Kristy and i am 21yrs old & new to the group. woot woot! i found out i had Marfans when i was 10 years old and have been on atenolol every...
Welcome, Kristi! My name is Amanda, and I am 24 with an 11-month-old son. I was diagnosed with Marfan's when I was 19. You are 21 and have been married for...
wow 21 i fat fingered a button there im actually 23 and have been married for 5 years. at first i was like what do u mean in 21 then i read what i typed and...
Lee, Is that your beautiful family pictured in the latest issue of Connective Issues? (see back cover and page 4) My son didn't meet the criteria for the...
Ditto to that Beth. Lee, you have an absolutely beautiful family. You and Julia must be very proud of those lovely children. Hope to see y'all at the...
Yes, that's my kingdom full of princesses (and a Queen and one prince) the King PS Oh yeah, thanks for the nice compliment...my favorite blond in on page...
Hi Everyone, I wanted to send an update to the list on developments with my trouble swallowing food. Ever since my gatroenterologist put me on Protonix for...
