Living Today, Adding Tomorrows

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
 

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!!!
 

shay

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

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.
 

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...
 

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)
 

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!
 
W

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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