Re: NDSC and NDSS

[Guest guest]

Sara,

Thanks for the dirt on the NDSC. I, unfortunatly am not surprised

to hear your story. A few years back when NDSC published

an article regarding Jensen who was waiting for a heart

transplant, I attempted to contact Mr. . I work at the University

of Pittsburgh Medical Center in Pittsburgh and thought if I got

some infomation that I could attempt to locate a surgeon who would be willing to

place this woman on a transplant list. I made a few phone

calls to which he put me on hold because he had to talk with his

wife. He evaded my questions and then got rude with me. I

wrote a letter to him complaining about the rude treatment and

received a call from the president at the time (I forget) who

was surprised by his reaction and stated about what a great

advocate he was, etc, etc.

I have never seen that and I was very unimpressed with

his actions at the convention this year.

I have to agree that with the Buddy Walks and the educational

material that the NDSS has produced, they really seem to be

in the forefront. However, the cost remains higher to join

and to affiliate as a parent affiliate. I would be really curious to

see the conference cost for the NDSS this year as compared to

NDSC. But, I have to stress as a parent of twins with DS,

just being among other families who have DS and the

potential we had to meet other families with twins and other families

who have children with DS was

the first and foremost reason we have attended the conventions.

What info I can bring back from the convention actually

validates my own educational stores at this point. I really

try not to get caught up in the political arena of any of

the agencies that are supposed to serve our children and

help make their lives easier. And, believe me I am very

active in a variety of agencies, sit on boards of certain

agencies, etc. The more I am involved with a variety of

agencies, the more educated and connected I feel. And that has

been the biggest aide in helping me get the best services I can

for my daughters.

Judi, the picture I sent you was a get together that those

other 3 families had a few summers ago..2 families we met at the

one convention and the other family I had met through a picture of

my girls in Exceptional Parent a few years ago that a genetics

counselor saw and hooked her up with us. Because twins who both

have DS is so rare, it is great to connect with other families who have similar

issues.

two of those families attended the convention in Pittsburgh this past year..

I only have a picture of my girls with one other set of twins from this

year's convention...but there's always next year...

I did moderate the parent of twins session at the convention this

year and we had a pretty good turnout. I have suggested that

they have something similar at NDSC next year..that was before I

knew about both conventions being in DC.

Pam, Mom to Shari and Jill, age 8, both with DS