Marfan's news segment 5.11.06

[Marguerite53]

Hi Gang. I don't have Marfan's but got curious and my boys aren't echoed yet. Anyway, got on the National Marfan Foundation mailing list and they just emailed me that there will be a segment on Marfan's tomorrow, Thursday May 11 at 8pm Eastern on CNN''s Paula Zahn Now show.

FYI Marguerite

MARFAN IN THE NEWS

Marfan syndrome will be featured on a segment on CNN's Paula Zahn Now, which airs at 8 pm Eastern (check local listings for time in your area). Those featured in the segment include NMF members Karen and Michael Murray (New York), the Nemchek family (California) and Dr. Hal Dietz (Johns Hopkins). The NMF is grateful for all the time and effort these individuals/families dedicated to the shooting of this segment.

As of today, the segment is scheduled to air on Thursday night, May 11. However, this has been changing and still can change. We will notify you of any changes, if possible.

Check your listings, set your TIVO or your VCR.

We anticipate a great response to this segment and hope we reach a lot of people who can benefit from the NMF's support, information and research. Please tune in!

Eileen Masciale
Director of Communications
National Marfan Foundation

Tel: 631.665.2163
Fax: 631.967.1799
[email protected]
NMF Network
National Marfan Foundation

email: [email protected]
phone: 1-800-8MARFAN
web: http://www.marfan.org

 

[Rain]

Thanks Marguerite!

Thanks Marguerite!

I am signed up for the newsletter too, but didn't get the notice.

Thanks!

 

[Eric]

Thanks for the alert...will try to watch.

 

[marka]

When I have researched Aorta problems information mostly references Manfans. Is the cause of Aorta problems in Manfan suffers the same for people who have a BAV? What's the relation if any? BAV aorta problems seem very mild compared to Manfans.

 

[Marguerite53]

I believe it is the connective tissue disorder which distinguishes the average BAV from the Marfan's BAV. I'm really have not read that much about Marfan's as I do not think it is a problem in my family. What I have done is alerted several other families I know who I think might want/need the info. Hopefully bringing this back "to the top" today will bring you a better answer than mine!

Marguerite

 

[Marguerite53]

Well, this may end up a wild goose chase. They've now been told that date is changed to Friday or Monday............ Marguerite

National Marfan Foundation

UPDATED: MARFAN IN THE NEWS

We learned late yesterday that the segment will not air on CNN tonight. Instead, it may run tomorrow night (May 12) or Monday night (May 15). The producer is pushing for Monday night. I will let you know if this changes yet again.

 

[Marguerite53]

National Marfan Foundation

The Marfan syndrome segment on Paula Zahn Now (CNN) is now scheduled for Wednesday, May 17. The program airs from 8-9 Eastern time. Check local listings.

It was bumped from Monday night because of the president's speech on immigration


............and so it goes.......... Marguerite

 

[Rain]

Did you get another update?

Did you get another update?

I think they lied to us Marguerite. I was busy doing other things... but I did have it on where I could hear it most of the time and I didn't hear a thing about Marfans.

Oh well. It was probably bumped again. They discussed college initiation and the Duke rape case. Sure glad my boys are through college... wow. I may to scared to let Sara go by the time she's graduated high school!

 

[Marguerite53]

Darn! I completely missed the update. Grrr. The last note said Wednesday, last night!! I'm so sorry!! Nothing from them today, so I don't know if it aired wednesday or not.

I looked at CNN.com for a transcript and nothing is up yet, but perhaps they will have it. There may also be some kind of a link from NMF, eventually. I'm sure they'll want people to be able to see it.

I'll let you know if I hear anything further.

Marguerite

 

[Marguerite53]

Guess Jimmy Hoffa took precedence last night!! And, for those of us who don't want to watch pretty Paula every night..........you can in fact access it online afterwards......if they ever really air it!! Marguerite

National Marfan Foundation

The Marfan syndrome segment is scheduled for The Paula Zahn Show tonight (May 18). It is on at 8 pm Eastern (check your local listings). If you are not able to see it on television tonight, you can access it online tomorrow at CNN Pipeline. CNN charges a small fee to access the segment.

 

[geebee]

I saw a short (about 10 minutes) clip on HNN this evening about a woman named Karen who "searches" for people with Marfan "appearances". She has a son named Michael who had Marfan's long fingers at birth and she spent quite a bit of time getting him diagnosed. Since she realized that he could have died without diagnosis (by playing sports, etc.) she has dedicated time to telling people about Marfan's even if it is by stopping people on the street and suggesting they get tested. There was a bit of information about Marfan's and the physical attributes of those who have it as well as the heart dangers. It mentioned some of the people who have died with the heart problems associated with Marfan's. Hopefully it will raise some more awareness.

 

[Marguerite53]

Okay. I just saw what Gina saw. However, I got it off the CNN pipeline. I just googled CNN pipeline and went to the appropriate link. Then I chose the "day pass" for $.99 and spent about 10 minutes worth of download time as I downloaded their (maximum cool, actually) video viewer/web player. (I don't know if my normal web player will work or not, I just downloaded theirs). You can opt to get video streams for $2.95 a month, or you can get a 14 day free trial but of course if you forget to cancel, they'll bill you.

I had to go into the drop down menu for Health (upper left corner). Then they listed the segments by date, down below and the "Marfan's syndrome mystery" came up on the 19th.

The story wouldn't shed any new light for any of us. It does mention a Dr. Dietz (?) at Johns Hopkins U and the work he is doing. It was a nice little segment that might open some eyes. It did place a high value on the mother's love and determination......something we all strive for, parents or not, in our quest for answers. So that validation was good.

Wish I could link it and share it, but they want your money!!

Marguerite