Re: Fw: Parent Board

[Guest guest]

Thankyou to all who are interested in being on the parent board! Rob and I are

getting things together and planning the next steps. My son has been with Dr.

Goldberg for 13 years and has made great gains, but has not " recovered " as some

of the nids kids have. My son is one of the nids kids who needs to get to the

next step, the immune modulator agents Dr. G has talked about for all these

years. I would like to do whatever it takes to help Dr. G get us to the long

awaited clinical trials that are needed. I know that some of the nids patients

have " recovered " and are doing extremely well. Dr. G has helped so many children

and their stories hopefully will help us get the word out that our children can

recover if given the right help. I look forward to working with Rob and all who

are interested in getting Dr. Goldberg closer to the agents that will help the

rest of our children(and others out there) to fully recover from this disease!

Gayle

parent board

> > klimas_bill@...

> > Date: Wednesday, July 16, 2008, 5:57 PM

> > Hi Bill,

> >

> > I understand that you are a driving force behind

> getting

> > the parent board together. I am very interested

> in

> > helping. I am not outspoken by nature, but as I am

> sure

> > that you understand having a kid with disabilities has

> made

> > me get over that. I have one child on the

> protocol,

> > Eli. He is 8 1/2 and has been a patient since just

> before

> > his 3rd birthday. Dr. G has saved my son. He is very

> > bright and I have no doubt that he would have made

> gains

> > without the medical help, but he has gone from zero

> > communication (well, there was the screaming) at age 3

> to

> > thriving (not socially yet, still a little akward) in

> a

> > regular classroom-- next year they are removing the

> aide.

> > We have a daughter, almost 5 (), who was born

> with

> > serious yeast issues but because of my strict

> adherence to

> > the diet while pregnant and nursing and a slower

> > vaccination schedule, she is doing very well-- not

> perfect

> > (lines things up when she's sick, still sometimes

> > can't " feel it coming " and doesn't

> make

> > it to the potty...). Certainly she wouldn't

> qualify

> > for any kind of diagnosis though. I am an at-home mom

> > about to send my youngest to Kindergarten so I'm

> hoping

> > I'll have some time on my hands that I can devote

> to

> > this. My husband is a computer programmer. He works

> on

> > websites and database stuff. He is very good (not

> just the

> > beaming of a proud wife) and very grateful to Dr. G so

> you

> > can count on his help if you need an IT guy. We live

> in

> > the Austin area, but visit CA once a year to see Dr.

> G.

> > Our home phone number is (512) 671-9049. Thanks for

> taking

> > charge because I think that most of the rest of us

> don't

> > know where to start.

> >

> > April