Guest guest Posted November 5, 1999 Report Share Posted November 5, 1999 Yes, I understand Pam. I spoke with the NDSS and if enough Multiples-DS folks are attending the conference we many be able to plan something with the NDSS's help. Maybe if you are still around you can at least come and put some faces to the names. Sara --- De <tyler2@...> wrote: > From: De <tyler2@...> > > 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 > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 1999 Report Share Posted November 5, 1999 Pam: Thanks for the info! Seeing as how this list has taken off, having twin's sessions sounds like a great idea! I wish they had something like that at the Dallas convention. At the Dallas convention, we did meet another mother of identical twins (girls). She was from Oklahoma and didn't have the girls with her. She was so excited to see the boys that she burst into tears! She had been feeling like she was the only one out there w/identical twins! I'm going to have to write to her again and see if she's " on-line " now. She wasn't last time we corresponded. If she is I'll tell her about the list. Judi --- De <tyler2@...> wrote: > 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 > > > > ------------------------------------------------------------------------ > http://DSyndrome.com/Multiples > <HR> <html> > ===== Quote Link to comment Share on other sites More sharing options...
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