Re: Guess what group members? My husband, son and I are going to be on Maury show

[Guest guest]

-- Wow that is going to be so cool and interesting. I hope ya'll

have fun and I was wondering if RSS has ever been mentioned on a TV

show or any news reports? Hugs can't wait to see it I love those

shows!!!I know Maury has done progeria kids and stuff but never heard

of rss it would be cool if we could go on with some of our kids!!

Then people would know and not freak out when you tell them what they

have !! Bye ,I tell them he has a rare genectic growth problem and

they are like uh... then I say a form of dwarfism but with elf like

features little ....( Hugs)

- In RSS-Support , " Laurie " wrote:

> Well group members here is a laugh. There was a blurb on the Maury

> show " Are you and your spouse opposites? " Well a friend of ours as

a

> joke called them, and told the show that I am 4ft 2 inches, my

> husband is 6ft 5 inches and my son is as tall and me. Well they

want

> us and we are going to fly to NYC next week for a filming of an

> episode. I am going to try and get to say something about RSS

> syndrome, but I am not sure what can be said. Wish us luck, when

we

> know the date I will write a message for the group.

>

> Laurie

[Guest guest]

Laurie - that is awesome!!! How exciting for you. If there is an

opportunity, can you can plug the RSS/SGA division of the MAGIC

Foundation, that would be great -- because what happens is that

families that are watching recognize either themself, or their

child, or someone they know in YOU, and they suddenly want to get

more information. This way they can go on-line to our website and

learn more about RSS!!!

> Well group members here is a laugh. There was a blurb on the

Maury

> show " Are you and your spouse opposites? " Well a friend of ours as

a

> joke called them, and told the show that I am 4ft 2 inches, my

> husband is 6ft 5 inches and my son is as tall and me. Well they

want

> us and we are going to fly to NYC next week for a filming of an

> episode. I am going to try and get to say something about RSS

> syndrome, but I am not sure what can be said. Wish us luck, when

we

> know the date I will write a message for the group.

>

> Laurie