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What was her job there. She didn't do anything to help our cause. The ones they were worried about voted it through.

Thank you for having the link for the live blogging. I followed it all the way and right now I so full of Emotion. Happiness, crying. Thank you, Thank you. the FDA advisory panel votes to recommend the approval of Orkambi in CF patients with the f508del mutation.

So sad to hear this. Prayers for all of them

Forwarded the infor to my facebook CF group. They are getting their letters together too.

Sending my letter right now, TODAY!!!!!

My two granddaughters have cf and we have been diffusing for acouple of years now. We use a Himalayan salt lamp with a built in diffuser. She also sells the different oils. My granddaughters are stable (both DDf508). We burn at night while they are sleeping and it is also a nightlite for...

I do remember right off if pancreatic insufficient; stools were almost a neon green color. Very noticeable if not on enzymes!

Our doctor said the same thing. His hopes are in the vx-661 and he told us that a year ago. I just hope the vx-661 doesn't get a delay if the vx-809 isn't promising.

Interesting read and fingers crossed! http://www.bizjournals.com/boston/blog/bioflash/2014/05/vertex-faces-seminal-moment-with-pending-cystic.html?page=all

Im so sorry to read this. I remember reading Jane's posts also about her sons. This is so tragic. My thoughts and prayers are with all of them.

Hi everyone, Im a grandmother to 2 girls with cf and I've been using essential oils for little over a year. We use a salt lamp with a built in diffuser for buring essential oils. This is the website we get ours from. The Munio oil is considered her theives oil. We are going to try the next...

I would love a Grandparents section. I'm a grandparent of 2 granddaughters ( ages 3 & 5). My daughter is a single mother and we are her main support team. It's hard at times; esp now, my oldest granddaughter is in the hospital with respiratory issues. It's the usual 2 week stay. Her grandpa...

Both granddaughters (3yrs & 19mths) only do HTS twice a day.   They tolerate it well.  They were not put on Pulmozyme. 

Both granddaughters (3yrs & 19mths) only do HTS twice a day. They tolerate it well. They were not put on Pulmozyme.

Both granddaughters (3yrs & 19mths) only do HTS twice a day. They tolerate it well. They were not put on Pulmozyme.

It's funny cause my daughter took a small video on her cellphone of her taking her enzymes. CHOP asked her to send them a copy of it and they were amazed.  It's funny she would take them over a spoonful of food. 

It's funny cause my daughter took a small video on her cellphone of her taking her enzymes. CHOP asked her to send them a copy of it and they were amazed. It's funny she would take them over a spoonful of food.

It's funny cause my daughter took a small video on her cellphone of her taking her enzymes. CHOP asked her to send them a copy of it and they were amazed. It's funny she would take them over a spoonful of food.

Why don't you just try putting the enzyme in his mouth whole, followed by the second.  He is already use to eating food and he will think its something different.  My daughter went through the same thing and around 8 or 9th month she just gave my granddaughter her enzyme and amazingly she just...

Why don't you just try putting the enzyme in his mouth whole, followed by the second. He is already use to eating food and he will think its something different. My daughter went through the same thing and around 8 or 9th month she just gave my granddaughter her enzyme and amazingly she just ate...