What's new
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

Keep On Keeping On!

point

New member
I just received this e-mail from the CFF. Always like to share great news. Something very impressive is the fact that the age has increased over 5 years in less than 4 years. Please spread the word!

Dear Friend of the CF Foundation,


We are pleased to report that the median survival age of people with cystic fibrosis has risen to 36.8 years--up from 35.1 in 2004!


For decades, the Cystic Fibrosis Foundation has tracked the health and longevity of patients treated through its innovative care center network. Caregivers at these centers collect confidential vital statistics about the health of CF patients, which skilled statisticians then analyze and publish in the annual CF Foundation Patient Registry Report.


As an interesting perspective, in the last four years alone, we have added more than five years to the median survival age of CF patients.


We attribute the improvement in both the length and quality of life to the fact that there are now more CF therapies than ever before--largely developed with the CF Foundation's support--and even more on the horizon. In addition, the standardization of care and the implementation of "best practices" throughout our care center network also are having an impact.


We will not rest until we reach the point when people are no longer losing their lives to cystic fibrosis. Today's trend of continuous improvement suggests that we are getting closer to reaching that goal.


Thank you for your interest and support of the CF Foundation's mission. Together, we are adding tomorrows every day to the lives of those with CF.




Sincerely,




Robert J. Beall, Ph.D., President and CEO

Cystic Fibrosis Foundation

6931 Arlington Road

Bethesda, MD 20814

www.cff.org

info@cff.org




P.S. To help us increase awareness for CF and the important work we do, please feel free to forward this message. Thank you for your interest and commitment.




To make a donation to continue your support of vital cystic fibrosis research and care,

click here .
 
S

skh

Guest
This is good news. Thanks for keeping us posted.

Sean, somehow I am sure you are going to beat the odds!
 

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SeanDavis</b></i>

Guys this isn't good news...I got 1.8 years left!!!</end quote></div>



If you only have that much time left then my husband should be remarried by now!
 

JennifersHope

New member
I got the same email, and I was all ready to forward it to my family and friends and then realized.. GEE I don't think they will see that as good news. I am 33...but I was real happy to read that.. and to me it is great news...

Jennifer
 

AttyMom

New member
in a strange way...too funny. Every time I hit a birthday that finally surpasses the median age...it beats me again!

Saw my doctor a week after turning 36 and joked with him that they'll suddenly raise the age to 36...and here it is. (He must have called the foundation!) <i>So I guess I am the CF median...just keep track of my birthday.</i> Definitely good news--it was only 18 when I was first tested for CF.

Now if they could only have the age be somewhere around 90...
 

anonymous

New member
Yes, it is good news, and i recieved the same email.. broke my heart though to hear Kait ask " Mom i may only live to be 36" we have talked about this before but i think she doesn't always understand and she knows how healthy she is now. Although she did say tonight that she has been doing her vest without being asked because she knows it will keep her healthier. Yeah, for my daughter!

Kaitsmom<img src="i/expressions/rose.gif" border="0">
 

anonymous

New member
Mathews

I would like for you to know what a wonderful job you have done with BCMH and how great it is to have an advocate like you ...always doing what you know needs to be done. Your husband is a blessed man to have you by his side. You deserve a big HUG.

Kaitsmom<img src="i/expressions/rose.gif" border="0">
 

ladybug

New member
THANKS FOR SHARING THIS!

I also got it awhile back and DID forward it to my family/friends along with my own message that although this a great accomplishment, it also serves to remind us all that we've a long way to go. I figured that would help put a "reason" to my sending it.

I was sooooo excited to hear that its up! How wonderful for those of us who are still fighting the fight.
 

Mathews

New member
BCMH funding is vitally important here in Ohio. I serve on the Ohio BCMH Legislative future funding commission. I also serve on the Ohio Cystic Fibrosis Legislative Task Force. If any Ohio folks want to know more, you can PM me.

Thanks for the encouragement. This is a HUGE job with lots of bumps in the road, but with perseverance, the outcome will be tremendous!!!
 
Top