Spencer's Quest for Kalydeco (C.F.)

Hello to you all,

My name is Chris, and I am making this page on behalf of Spencer Edgar, who would never ask for anything like this, as that is just who he is. Spencer has Cystic Fibrosis which is a recessive genetic disorder that affects the lungs, liver, pancreas, and intestines (http://www.cysticfibrosis.ca/en/aboutcysticfibrosis/index.php), but he is one of a very small percentage of people (under 100, I believe) living in Canada that can benefit from a new drug called Kalydeco (http://www.kalydeco.com/). This drug is designed to treat the genetic mutation itself (G551D), rather than simply treating symptoms, which are what his current medications do. Kalydeco could change his life, helping to normalize his lung function, and he has been approved as a candidate for it, but in Canada, the government has chosen not to fund the drug, and with a $300,000 price tag, it is currently inaccessible. Just for a bit of a breakdown, that works out to $800/day and $400/pill, which is utterly ridiculous. Sadly, none of us close to him can afford that bill, as much as we wish we could.

Spencer's lung function has been dropping dramatically over the last year, and this is basically the time when this drug is absolutely necessary for him.

He has recently been hospitalized for a ruptured blood vessel in his lung, which ended up being a 20 day stint in 2 different hospitals, locally in Sault Ste. Marie, then he was flown to London (which was heartbreaking for me). He has decided to withdraw from University to focus on his health. He is only 20 years old, he means a lot to me, and I can't just sit here and give up (I will never give up!), so this is my fight for him. Let's please buy him some time and hope Kalydeco gets funded soon.

Thank you from the bottom of my heart,

Chris Moore





UPDATE: So at this point Spencer has decided that he will be going back to University after all. He has been feeling quite a bit better lately, and also realized that he might lose his current medical coverage through his mom, should he drop out. So back to school it is.





Please take a moment and sign this petition as well, as it is important in getting Kalydeco funded:

http://www.change.org/en-CA/petitions/alberta-premier-redford-and-health-minister-horne-provide-cystic-fibrosis-patients-with-the-drug-kalydeco

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Organizer

Chris Benji Moore 
Organizer
Sault Ste. Marie Central, ON
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