J
jaybird
Guest
Hi Grandma!
Sounds like you are doing so much, it must be nice to be close to be able to help out. My folks are 1000 miles away, hard to zip over and babysit for a night! ha ha ha
I had two more suggestions. One, is to keep up with press releases from CFF.org. Check out all the good news and forward it on to your son and DIL. It helps, especially at first dx, to know they are working on the cure.
Two, get involved with Great Strides-the national fundraiser for the CF foundation. Being a team leader helps to feel like I'm making a difference for other families with CF. Plus, it gives you and your family a network of people who are going through the same thing.
ok, make that three suggestions--check into your state's newborn screening program. Make sure that CF is a MANDATORY screen. Do NOT rely on cff.org's list because my state was on there due to an OPTIONAL program that was offered. You can make a difference!!! And it feels good!!
Best of luck!
Sounds like you are doing so much, it must be nice to be close to be able to help out. My folks are 1000 miles away, hard to zip over and babysit for a night! ha ha ha
I had two more suggestions. One, is to keep up with press releases from CFF.org. Check out all the good news and forward it on to your son and DIL. It helps, especially at first dx, to know they are working on the cure.
Two, get involved with Great Strides-the national fundraiser for the CF foundation. Being a team leader helps to feel like I'm making a difference for other families with CF. Plus, it gives you and your family a network of people who are going through the same thing.
ok, make that three suggestions--check into your state's newborn screening program. Make sure that CF is a MANDATORY screen. Do NOT rely on cff.org's list because my state was on there due to an OPTIONAL program that was offered. You can make a difference!!! And it feels good!!
Best of luck!