Monday, February 05, 2007


NF1
wed. feb. 7th at 8 p.m.

THE LEARNING CHANNEL is airing a special:


"NEW FACE, NEW HOPE"


the program follows 2 west Michigan

NF patients through facial reconstructive surgery.


i have yet to see it, but one of the NF groups i give to

and get info from ,NF Mid Atlantic is featured.


it is said to be intense viewing(yeah i guess so)

and that these 2 cases are 2 of the rarer ones

(yes, that's one reason why NF1 is misdiagnosed even

though it is not a rare genetic disease)


anyway, thought i'd give the program a plug as well as organizations like NF Mid Atlantic and

THE CHILDREN'S TUMOR FOUNDATION ctf.org


thanks, sherry




2 comments:

LSqrd said...

Yikes!! Sounds nasty. I don't think I've ever heard of "NF" before today.

Sherry Pasquarello said...

yes, you have only it was called ans still is, "elephant man"

poor merrick had protus AND nf1. thankfully there seems to have never been another case like his but NF 1 and 2 are awful genetic diseases and NF1 is more common than cystic fibrosis. it can be so mild as to never know one has it or it can kill. your children have a 50/50 chance of having it but if they don't then they can't pass it on. 50 percent of the time it is passed on, but it can also pop up in a family out of nowhere.
it is a defect on the 17th chromosome.

i keep checking Ebay, but nope, none for sale yet, ha!

i have not seen the special, but i am looking forward to it with a little bit of nervousness.

until recently, it was woefully underfunded as to research, still is compared to other diseases. i was not properly diagnosed until i was 46 tho my med files were a clear indication of NF1. i have met docs that have little knowlege of it.

reserches feel that finding the key to NF can perhaps lead to better treatment or even a cure for cancer.

it's a worthwhile donation.
i like ctf.org