Name:

Sue

Email:

TheOneills@our-sma-angels.com

Comments

Hi everyone! I thought this would be a great way for people to share their experiences at the conference. I'd love to get everyone there to sign this page. If you know people that were there--ask them to visit this page and leave their thoughts! ~~Sue!~~

Name:

Liz Dutzy (mom to Kalair Myrick w/SMA type one)

Email:

kalairs-mom@our-sma-angels.com

Comments

Hello to the O'Neills!! We had a great time at the conference, and it was especially nice to meet both of your handsome boys in person! We hope by next year there will be even more in attendance and more attention paid to SMA nutrition, but I think everyone did a wonderful job pulling this year's conference together. I wish we could have spent more individual time with you all! Tell Casey I think it's awesome how well he does with the eye blinks, and he has inspired me to work on something similar with Kalair (who BTW is saying more and more words (yay!) but almost exclusively on her bi-pap which she is not on much during the day. And tell Colin to keep up the good work, we cannot believe how strong he is. BUT we still want to hear that he is CONSISTENT with the bi-pap and in/ex (don't worry Sue, he'll get there...) Well, I guess that's all for now. My bi-pap princess just went to bed, so now I get to tackle this disaster area we call home. :-) Kalair sends big hugs and kisses (she knows Colin is taken, but Casey's really not THAT much older than her...LOL)

Name:

Brenda

Email:

BracinKnee@aol.com

Comments

Hi Sue: Great idea! We had a great time at the conference! MJ is working on a scrapbook with all the pictures she took (so if anyone has extras they can email us, that would be great). Just an FYI: MJ gave out beanies for the fun of it but then decided to do it for her silver award for Girl Scouts. When we get the scrapbook done, we are going to scan it in and add it to a website so everyone can check it out. So, please send pictures so we can add them!!! We are doing email pics, so we don't need the real copies. Thanks everyone.

Name:

Nadine Schaper, mom to Jarred 2 yrs Type I

Email:

islandgirl@myfirstlink.net

Comments

A big Hello to the O'Neills!:) To Casey & Colin, such sweet boys, Jarred had fun meeting everyone although he was a tired boy from the trip. We were just overwhelmed with the tenacity of other parents out there, it is a tremendous solace to know we are all fighting the same battle & just as strongly. It is nice for all of us to keep in touch via our online forums. Thanks to Dr. Bach & countless others for a wonderful conference, I see it as a springing board for bigger and better things. I know Dr. Bach is anxious to get those questionaires out about "the diet". I still run into other families that are so reluctant to put their kids on the diet, but what do we have to lose really by doing it??? In conjuction with the protocol. Well, we all know the difference it makes. Looking forward to an even better time next year, perhaps a bit longer and more organized;) Hugs & Kisses to all of you, see you next year~

Name:

Tracy and Skylar (SMA1, 2 on June 3rd)

Email:

OurLilSky@aol.com

Comments

Hi Sue, Gene, Casey and Colin. We had such a good time meeting everyone at the conference! Casey and Colin are so lovable! Casey is very inspirational with his eye blinks. Who ever said you need words to talk?! Our children are true angels on Earth and we can't wait to see you again next year! Love to you all. Tracy and Sky

Name:

Mary Ellen Barrelle - Shaun's Aunt ME-ME

Email:

mebarrelle@hotmail.com

Comments

Hello to the O'Neills and to all the wonderful people we met at the Training! Sue --- you are amazing --- my film is still in the camera! (Technologically challenged, don't even own a digital yet). The best part of the Training was meeting and talking to the families and their children, followed by the lectures and workshops. The Embassy Suites was an easy place to stay (a far cry from Camp Hemlocks, our usual overnight hangout), and as we were leaving on Sunday morning Shaun said "I really wish I could stay here another month or two!" We are looking forward to going back next year and meeting even more terrific people. Take good care, all of you.