Monday, October 27, 2008

In memory


                                                                   Maggie Mackey 
                                                                      rest in peace
                                                                       1988-2005



Come with Me

The Lord saw you were getting tired
And a cure not to be,
So he put his arms around you
And whispered, "come with me"

With tearful eyes, we watched you suffer
And saw you fade away
Although we loved you dearly,
We could not make you stay.

A golden heart stopped beating,
A beautiful smile at rest,
God broke our hearts to prove
He only takes the best.

It's lonesome here without you
We miss you so each day,
Our lives aren't the same
Since you went away

When days are sad and lonely,
And everything goes wrong,
We seem to hear your whisper,
"Cheer up and carry on."

Each time we see your picture,
You seem to smile and say,
"Don't cry, I'm in God's keeping,
We'll meet again someday"
-author Unknown-

When you lose someone who is important in your life you feel like part of you went with them. You feel empty and lost. After time the pain is still there and nothing seems to make that ache in the heart feel less painful. I think the one thing you can do to honor the ones who have passed is to remember them and keep their memory alive.
 Maggie, you are gone but never forgotten, In my heart forever.
 x0x0x


Saturday, October 25, 2008

Thursday's

I think thursdays are my favorite day now, I volunteer at a school and I love it. It's 2nd grade and so much fun. The kids are great and its something i have always wanted to do.
Im feeling well, nothing to complain about. I'm looking forward to the bowl for breath Nov. 8th if you are interested in a fun day of bowling let me know and i'll tell you all about a great event. 
 time for treatments x0x0x

Monday, October 20, 2008

Hi

I took the time to find all kind of other CF blogger's.
 so welcome welcome welcome! please say hi and introduce yourselves 
 I hope I get to know all of you. 
 x0x0 Jess

New info on Drug

Foundation Announces Positive Results for VX-770 – An Investigational Drug that Could Treat Basic Defect

October 20, 2008

The CF Foundation announced today that VX-770, an investigational oral drug aimed at treating the basic defect in cystic fibrosis, showed positive results in a 28-day, Phase 2 clinical trial. These data bolster the successful interim results reported from the first part of the trial in March of this year. Both studies were done with patients who carry the G551D mutation of CF.

“Data from the Phase 2 trial of VX-770 provide evidence that a small molecule can address the basic defect in cystic fibrosis, and suggest that modulation of CFTR may play an important role in CF therapy,” said Robert J. Beall, Ph.D., president and CEO of the CF Foundation.

VX-770 is being developed and tested by Vertex Pharmaceuticals Incorporated, with support from the CF Foundation. The potential drug aims to open the chloride channels that do not function correctly in people with CF.

Going Forward

Based on the positive results from this trial, Vertex plans to work with global regulatory authorities, including the U.S. Food and Drug Administration, to move VX-770 forward in the approval process. The company is targeting the first half of 2009 to initiate a pivotal trial that could eventually lead to drug approval.

The Foundation will work with Vertex to identify which CF patients this drug may work for going forward. Read more about about participating in CF clinical trials.

Detailed data from the VX-770 clinical trial will be presented this week at the 2008 North American Cystic Fibrosis Conference. Read the full Vertex press release here.
This was about a year or so ago. Always sick during the holidays...it doesnt seem to be thanksgiving or christmas with out a lil' extra juice! haha
Thats all for now.

Sunday, October 19, 2008

p.s.

P.S. I don't know if you can tell by the picture, but I'm ENGAGED!
  

Wow

This Blogging thing is alot of fun...im sorry it has been a while since i have posted. I read SOOO many people's blogs and they are so great. 
 I'm feeling alright i have an awful cough that is hurting so bad...my back my chest hurts so much. Im just trying to stay on top of my treatments and do everything i can do. Some times it gets so hard to do the same thing over and over when you feel very little results. but what can you do?
 shout out to Trisha from Confessions of a CF Husband. Keep Trisha and her family in your thoughts she is going through some rough stuff. Everyone out there needs extra support!
 x0x0x Jess
 

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