I saw this video (not CF Patients) and was reminded of all the time CFers spend that isn't even identified or quantified.
The treatment burden covers more areas than realized by these patients
Dr. Sawicki gives a radio broadcast on treatment burdens on CF RADIO:
There have often been trained scientists here.
One I love to remember is: lightnlife, Lauren Beyenhoff's user name.
Lauren was a scientist who wrote some great articles for us.
One I highlight today was written in May of 2008, when she interviewed Francis Collins, the director of the National Institutes of Health in Bethesda, Maryland. This interview may mean even more today as these drugs pass into our reality.
I imagine she is smiling down on the whole CF community
Updated 07-21-2014 at 03:41 PM by Imogene
Here at cysticfibrosis.com, we know that scientists matter. They are behind all the treatments taken.
I remember the first days of cysticfibrosis.com when people were having trouble with the directions for taking Pulmozyme…we went right to the Genetech Website: www.gene.com and right on the homepage page was Steve Shak’s phone number: the inventor of dornase the Pulmozyme drug.
He answered the phone! He was surprised to talk to us and he was as kind as he looks but
Dear Members and Friends of CysticFibrosis.com,
Many of you may already have noticed the presence of Chris Baldwin here at the forums.
I met Chris on LinkedIn during the spring of 2013.
As many of you know, in my “other life”, I am a “domainer”. I began my career on the web in 1996, purchasing niche, valuable domain names.
Since my original business partner had CF, CysticFibrosis.com was an original domain purchase and this amazing community grew
My daughter seems to be gradually getting a moonface look which would suggest possible Cushing syndrome. She doesn't take prednisone, but does take Symbicort and a nasal spray called fluticasone. She took Advair since 2004 then switched to Symbicort at the beginning of the year due to insurance reasons. Anybody else have experience with this? We are going to clinic to discuss this next week but wanted to hear from anyone that may have had this same thing happen. Thank you!