September 11, 2012
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CVS/pharmacy generously raised more than $5 million through the five-week campaign. The funds were equally shared by the two beneficiaries of the fundraiser: the Cystic Fibrosis Foundation and the ALS Therapy Alliance
That is awesome news! I got teary eyed just reading that. It's amazing to hear that so many generous people contributed 2.5million dollars in just 5 short weeks...and that was mostly donations of pocket change as they checked out at CVS!
A year ago I probably would've skipped right over the article, because it just wouldn't have been of interest to me.Although if we had a CVS close by, I'll admit I'd probably donate to CF without even knowing what it was. I'm a softie, seems like everywhere you go now, the grocery store, movie theater, BMV, Arby's, even the dollar store, your asked to donate $1 to help with school supplies, or to the blind kids or homeless, etc. I always do, and I'm glad now that I have....Let's be real folks, I'm far from wealthy, but a $1 here and $2 there isn't going to change my life. What it will do is go to a cause that may change someone else's...Maybe even OUR daughter's one day! So next time someone asks if you'd like to make a dollar contribution to such and such, think of this face..and please DO! Once again we thank everyone who has been so generous and so supportive of our daughter and our family! We have been shocked by how many friends and family want to help, and even how people are coming up with ideas on their own!
She loves to take care of her baby!
She feeds her a bottle and even burps her!
She's so happy, such a blessing to us!
I do not want to come across as always trying to ask for donations or guilt people into giving us money. I would just simply like to share the CFF's motto, that "money buys science and science buys life"
Every dollar donated to Cystic Fibrosis Foundation goes to researching new meds and making that leap to find a cure for EVERYONE. As I've previously said the new drug Kalydeco is currently available for people age 6+ with the certain gene Violet has.( G551D) This gene is so rare that only 4% of the 30,000 people with CF have it. This drug has been proven to not only eliminate symptoms, but it also improves lung functioning! How lucky are we??
Also exciting, the same drug company is in it's final stages of trials for a drug that will cure symptoms in people with 2 copies of the most common gene. (Delta F508) This gene is so common more then 50% of CF patients have 2 copies, while 40% have at least 1 copy.
(Violet is fortunate to have Delta F508 and G551D)
So our next step is to try to keep Vi as healthy as possible and get her on the drug as soon as she is 6. ( unless is is approved for her at a younger age) There is currently talk that they are planning research with 2-6 year olds, but nothing has been set in stone, yet!
As always, we are staying positive and enjoying our girls!!!
Violet can finally stand up and play in the sandbox. For months she would point and make noises when Ava would play in there. Now she can stand long enough without holding onto anything and use those hands to dig!
That's my chair right there, ready to spring into action if anyone tries to eat, or throw the sand! This is very exciting for Violet because it involves getting dirty and mom doesn't usually let her do things like that. Sometimes you have to let kids be kids, right?
On a side note, lots of soap, water and hand sanitizer were used following this sand table experience!!!
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