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CF education day
- Thread starter hbollotte
- Start date
S
semperfiohana
Guest
if i remember right and this was long long ago...i went with my parents and they took the kids off to play and the parents attended whatever. but i do remember not going after once or twice because of cf bugs. but i could be thinking of something different i'll call my mom and ask her tomorrow.
S
semperfiohana
Guest
if i remember right and this was long long ago...i went with my parents and they took the kids off to play and the parents attended whatever. but i do remember not going after once or twice because of cf bugs. but i could be thinking of something different i'll call my mom and ask her tomorrow.
S
semperfiohana
Guest
if i remember right and this was long long ago...i went with my parents and they took the kids off to play and the parents attended whatever. but i do remember not going after once or twice because of cf bugs. but i could be thinking of something different i'll call my mom and ask her tomorrow.
Haley,
I've been to two education days, and both were mostly families, with a sprinkling of CFers. Every center is different though, and ours is coordinated by the peds end of the CF Center, and the Family Advisory Board. For whatever reason we've had trouble getting more adult CFers involved. As a parent though, I love seeing the adults there and hearing about their lives and successes, kind of gives me hope. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope you'll enjoy it. I usually learn a lot, but we're only 9 yrs into the journey.
I've been to two education days, and both were mostly families, with a sprinkling of CFers. Every center is different though, and ours is coordinated by the peds end of the CF Center, and the Family Advisory Board. For whatever reason we've had trouble getting more adult CFers involved. As a parent though, I love seeing the adults there and hearing about their lives and successes, kind of gives me hope. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope you'll enjoy it. I usually learn a lot, but we're only 9 yrs into the journey.
Haley,
I've been to two education days, and both were mostly families, with a sprinkling of CFers. Every center is different though, and ours is coordinated by the peds end of the CF Center, and the Family Advisory Board. For whatever reason we've had trouble getting more adult CFers involved. As a parent though, I love seeing the adults there and hearing about their lives and successes, kind of gives me hope. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope you'll enjoy it. I usually learn a lot, but we're only 9 yrs into the journey.
I've been to two education days, and both were mostly families, with a sprinkling of CFers. Every center is different though, and ours is coordinated by the peds end of the CF Center, and the Family Advisory Board. For whatever reason we've had trouble getting more adult CFers involved. As a parent though, I love seeing the adults there and hearing about their lives and successes, kind of gives me hope. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope you'll enjoy it. I usually learn a lot, but we're only 9 yrs into the journey.
Haley,
<br />I've been to two education days, and both were mostly families, with a sprinkling of CFers. Every center is different though, and ours is coordinated by the peds end of the CF Center, and the Family Advisory Board. For whatever reason we've had trouble getting more adult CFers involved. As a parent though, I love seeing the adults there and hearing about their lives and successes, kind of gives me hope. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope you'll enjoy it. I usually learn a lot, but we're only 9 yrs into the journey.
<br />I've been to two education days, and both were mostly families, with a sprinkling of CFers. Every center is different though, and ours is coordinated by the peds end of the CF Center, and the Family Advisory Board. For whatever reason we've had trouble getting more adult CFers involved. As a parent though, I love seeing the adults there and hearing about their lives and successes, kind of gives me hope. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope you'll enjoy it. I usually learn a lot, but we're only 9 yrs into the journey.
T
TleighsHusband
Guest
I got to speak at one last fall for Tiffany's CF center. The morning was geared towards peds CF and the afternoon was geared towards adult CFers, but they discouraged patients from coming and instead they streamed it live through the internet where my wife watched from home. It was a good day and I learned a number of things and was able to network with other folks. Families were the primary attenders from what I could see.
T
TleighsHusband
Guest
I got to speak at one last fall for Tiffany's CF center. The morning was geared towards peds CF and the afternoon was geared towards adult CFers, but they discouraged patients from coming and instead they streamed it live through the internet where my wife watched from home. It was a good day and I learned a number of things and was able to network with other folks. Families were the primary attenders from what I could see.
T
TleighsHusband
Guest
I got to speak at one last fall for Tiffany's CF center. The morning was geared towards peds CF and the afternoon was geared towards adult CFers, but they discouraged patients from coming and instead they streamed it live through the internet where my wife watched from home. It was a good day and I learned a number of things and was able to network with other folks. Families were the primary attenders from what I could see.
so i went to the education day. it was great. i learned about the drugs in the pipeline and the vertex 770 and 809. i can't believe they are a PILL!!!
if you haven't heard the stenzel twins speak you need to. they are an inspiration and pretty funny too! i can't wait to watch the documentary that is coming out on their story.
www.thepoweroftwomovie.com
if you haven't heard the stenzel twins speak you need to. they are an inspiration and pretty funny too! i can't wait to watch the documentary that is coming out on their story.
www.thepoweroftwomovie.com
so i went to the education day. it was great. i learned about the drugs in the pipeline and the vertex 770 and 809. i can't believe they are a PILL!!!
if you haven't heard the stenzel twins speak you need to. they are an inspiration and pretty funny too! i can't wait to watch the documentary that is coming out on their story.
www.thepoweroftwomovie.com
if you haven't heard the stenzel twins speak you need to. they are an inspiration and pretty funny too! i can't wait to watch the documentary that is coming out on their story.
www.thepoweroftwomovie.com