GUESS WHAT???? I got a fire truck to come to our walk next Saturday!! YEA!!! They will be there from 10-11. I'm SO excited!! I know the kids will LOVE it!! Not so sure how this will work with the germs and trying not to let the CFers cross-contaminate each other?!? I guess we'll see how it goes this year:)
I have been getting SOOO many people come up to me saying that they saw the commercial we made!! Some say that they thought I was in their living room, b/c they heard my voice;-) LOL I even got an email from someone who saw the commercial!! Her step brother passed away from CF and that she lives in our area. She said that she would love to join us and help out in any way possible! Thanks Lisa;-)
I'm SO glad that the word is getting out there about our walk! I hope we have a GREAT turnout next Saturday:) I'm getting REALLY excited and can't wait!! I also can't wait, b/c my sister D is driving in with her 3 kids the day before the walk!! Having them there to witness our FIRST walk in our town is AWESOME and just makes it that much better!!
To think....a year ago I had this whole walk all planned out in my head, and now...well, now it is all coming true;-) THIS ALL STARTED BECAUSE OF YOU, LIL' CHRIS!! Look at the difference you are making in this world already, and you are not even 2 yet!! =)
If you haven't donated yet, please click here to donate. Time is running out:) If you want to know where your money is going, read this email I got from the CFF...(it goes towards finding a cure;-)....
Research update: Your donations at work!
1. Inspire Pharmaceuticals, Inc. (in RTP) recently announced positive results from a Phase 3 clinical trial of denufosol, an inhaled therapy for the treatment of CF. Denufosol is designed to improve chloride transport in the airways and enhance mucus hydration and clearance.
--The study, called TIGER-1, involved 352 patients over a 24-week period. It showed significantly improved lung function in patients taking the drug. The data from this trial is particularly encouraging because it brings the CF community one step closer to a novel treatment that addresses the basic defect in CF.
2. The CF Foundation announced recently 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.
Again.....all donations go towards finding the cure that we all want SOOOO desperately, so that all CFers can live past 37 years of age, get married, have children, and grow old like the rest of us. Aren't they worth it?????
M
PS. I can't believe my lil' man is going to be 2 on Saturday!! =)
PPS. Thank you to everyone for all the great entertainment ideas for our walk. I really appreciate it;-)
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5 years ago
1 comment:
What a great idea - a fire truck. The walk will be great! The kids can just wash their hands when they are done. I finally saw the commerical! You and Chris did a great job. Did I tell you that a woman whose best friend died of CF is donating a $99 portrait package to our door prizes? I cannot remember when I talked to her and you. I think she is going to try and come to the walk too. If you send me a list of everyone who you collected donations from, I will make a poster thanking them and we can display it at the walk! I can also send thank you notes and let the stores know how much our walk raised. Mary
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