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Help Lauren get the opportunity to throw out the first pitch at a Phillies game!

Dear Friends and Family,

We hope everyone is doing well during this mild winter. As you can see, we have sent out our letter about a month earlier than we normally do. There is a big reason for this which we’ll mention later. Lauren is now 9 years old and in third grade! We have had a busy year. As many of you know, Lauren developed an infection in her lungs. It started in December and eventually required her to spend 14 days in the hospital on iv antibiotics. Through it all, Lauren remained happy and positive. She continues to be an inspiration to us.

Lauren is really enjoying third grade and is doing very well. She will play lacrosse for the first time this spring. She played basketball again this winter and loved it. Whether building with Legos or running around outside, Lauren is always on the go.

The only thing that slows her down is her battle with Cystic Fibrosis, the #1 fatal genetic disease in this country. Thanks to the Cystic Fibrosis Foundation and the generous support it has received over the years, many medications and treatments have been developed which have helped Lauren tremendously. However, now that she is becoming allergic to an ever increasing number of antibiotics and other medications, it is more important than ever that new drugs are developed that she can use. Each day Lauren does treatments and takes medications necessary to keep her lungs clear without ever complaining. She never gets a break from this disease. We are very proud of all that she has accomplished in spite of CF.

There is very good news to share. The CF Foundation also estimates that more than a dozen Phase 3 trials will be completed by 2013, a considerable achievement that continues to fuel our hope and optimism. Your donations are helping to make a huge difference. We mentioned in our last letter that Vertex Pharmaceuticals was developing VX-770 and VX-809, two oral drugs designed to treat the underlying cause of cystic fibrosis. VX-770 (Kalydeco) is now available for about 4% of CF patients with the G551D mutation. Researchers believe that by using VX-809 in combination with VX-770 it will allow the CFTR protein in the cells to work the way it should in patients with the Delta F508 mutation. This is the mutation that Lauren and 90% of people with cystic fibrosis have. The combination of the two drugs is currently in stage 2 trials. We should know sometime in 2013 if this combination will be able to help Lauren and others with the Delta F508 mutation. This treatment could truly change Lauren’s life! The CF Foundation worked with Vertex to discover VX-770 and VX-809, and has provided substantial scientific, financial and clinical support throughout the development process, including an approximately $75 million investment.

The Big Reason for the early letter! The Top Fundraising Team as of Monday, April 9, 2012 will be awarded with the opportunity to have someone throw out the First Pitch at the April 13th Phillies Game. (Cystic Fibrosis Awareness Night at Citizens Bank Park) This would mean so much to Lauren if she was the one throwing out the first pitch. As you know Lauren is a huge sports fan and loves the Phillies. Lauren’s Lifesavers was, again this year, the Delaware Valley Chapter’s top fundraising team and Lauren received the award for being the top fundraising walker, so we know we can do it again, but we need your help. We are so proud of these accomplishments and could not have done it without your support.

Our Great Strides walk this year is on Sunday, May 6th at Kimberton Park in Phoenixville, a new location. This will be our 10th year walking!

You can register for the walk or make a donation online by going to Lauren’s Great Strides web page: http://www.cff.org/Great_Strides/LaurenBlack .

Even if you cannot walk with us on May 6th, you can still join our team and register for the walk. For every $500.00 you raise by the end of March you’ll get a ticket to the April 13th Phillies game, and hopefully see Lauren throw out the first pitch.

Once you register, you will be given your own donation page that you can share with people by email or Facebook.

You can also include a link to Lauren’s video which can be found at www.albertlandscaping.com and/or her donation page. (Just click on the cystic fibrosis link, then the video link.) We can also send you the link and/or a write-up that you can use in an email or add to your walk page. Please call us at (610) 495 9615 or email cblack8@comcast.net if you have any questions.

We still don’t know what the future holds for Lauren. This disease progresses differently in everyone. It has already started affecting Lauren’s lungs. This is why we are asking you to support the CFF so that one day, CF will no longer stand for Cystic Fibrosis; it will stand for Cure Found. It appears that we are getting close to this day. We look forward to the day when Lauren, and thousands like her, will get a break from this disease. We sincerely thank you for all your past and future support. We have an amazing group of friends and family and we couldn’t fight this disease without you.

Sincerely,

Ann and Colin Black