Our Great Strides teams started walking this weekend! The walk in Connecticut was on Saturday as well as the walk in South Carolina.
The South Carolina walk raised over $120,000, which was more than they raised last year. That's such great news for the CF Foundation, as I had mentioned that they were going into deficit funding to support the research and pharmaceutical companies as they push forward with what they're working on that will change the world for Drew and others with CF. Our team, as of today, has raised $16,005. Our original goal was $15,000, but then I doubled it. The foundation needs the money and they need us to raise it. I don't know if we will make it to $30,000 this year, but I'm hoping that by the end of May when all donations are accounted for, we will have over $20,000 credited to our team. That's awesome, but its not enough. To put it into perspective a little, look at this invoice for Drew's medications this month -
That's right - $3541. Look at the "Day's Supply" column. That's only a months worth of medication. Thank God for good insurance and supplemental state insurance that covers most of these bills. This is medication that Drew needs every day, several times a day. What if the state budget cuts the funding for the Bureau for Children with Medical Handicaps and I have to come up with cash for this? What about people who don't have good insurance and can't afford these drugs that their children need to live with this disease. What if there isn't enough money to fund the research that will cure CF? This is why I'm bothering all of you with letters and emails and fundraisers and everything in between. This is why I volunteered to be the State Advocacy Chair. I need to email our legislators and let them know why its important for them to keep these programs when they plan the budget for the upcoming year. I need to tell them to support the National Institute of Health and the Food & Drug Administration, the people who will approve that drugs like VX-770. If cuts happen, it will take longer for things like this drug to make it through the pipeline.
Not everyone cares about CF as much as I do. But if not me, who? That's why I bug you. That's why I ask for your help and support. I'm still looking for people to join me next week when we walk at Sawyer Point in Cincinnati and in Philadelphia and San Francisco with the hundreds of other families affected by CF. We would love you support now and going forward. It means so so much to us.