Living Today, Adding Tomorrows

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shay

New member
Hey all,
The Cystic Fibrosis Foundation has a new video series to raise awareness called "Living Today, Adding Tomorrows". My daughter was featured in the most recent release, so being the proud mama that I am:eek:, I thought I would share it with the group. Here you go:

https://www.youtube.com/watch?v=Fgv2uHoKtfs

Best to all,
Shay
 
A

Aboveallislove

Super Moderator
Hey Shay,

Thanks for sharing! I had tears in my eyes throughout...she had me at the "I have this disease because I can handle it." I tell that to our son ALL the time and it's true!!! And she is so beautiful and well spoken...you must be so proud.

I am so so sorry for the loss of your son...sending you a big hug.

Great job mama!
Love
PS Is that you making an appearance at dinner? And it looks delicious!!!
 
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shay

New member
Thanks everybody! I thought the video really portrayed the isolation aspect of this disease.
Best to all,
Shay
 
J

Jet

Member
Thank you for sharing. Your daughters story and mine are pretty similar albeit 30 years apart. I to lost my older brother as a kid. She's got a great attitude that is going to serve her well. You have every right to be very proud of her.
 
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shay

New member
Hi imported momto2,
We do manual cpt once a day and vest once a day. Mostly just for the variety. My daughter isn't certain if one is more effective than the other so we just split the difference and do one of each :)

Hey Jet,
Sorry to hear you lost your brother as a child. This is not an easy life sometimes...
 
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imported_Momto2

New member
Shay, that certainly makes sense. I was just curious, since I always thought a good manual PT beat everything else (and I cant tolerate the vest).
That's a nice approach, to break it up, so to speak (FART2)
 
S

sfmarik

New member
I work with a company that is developing a series of 2-3 minute videos featuring actual CF patients sharing their candid thoughts and positive experiences regarding nutrition, adherence to enzyme therapy and overall GI health.


To accurately reflect the diverse make-up of our community, we are deliberately recruiting an ethically diverse group of patients and parents for this project. If you are interested, please go to the page below to complete a short survey:
http://cfedu.questionpro.com


Feel free to reply with any questions!
 
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windex125

Guest
Thanks for sharing that was great, it made me tear up as well esp. the sentence I have it cause I can handle it... it's the one question I hv never been able to answer I as well hv 3 other siblings no CF. I was the chosen one, I always thought why me? ... and I guess that is the perfect answer cause I can handle it.. Pat/60
 
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