Donations

In honor of Giving Tuesday I felt this might be appropriate. If you are feeling charitable or simply feeling like "Man, I wish I could help Jamie" let me tell you that there are a few things you can do.

The first is consider a donation to the CF Foundation. They are a truly wonderful organization and it is safe to say that without the work they do, I would not be here. The CFF is highly involved in research for us, and a huge portion of dollars raised goes straight towards it. Together with drug companies, they have helped with many clinical trials to develop drugs that have kept me and many others going. You can view the "Pipeline" on their website too, to see what is currently in development. And let me tell you how exciting that is...

Last year, a drug called Kalydeco was approved for treating 4% of the CF population because only a small percentage had that gene mutation. It was a monumental achievement because this drug targets the exact gene, the exact root of the problem of CF, and corrects a stop codon to form a protein (again, in the gene) so the gene acts as though it does not have CF. Amazing, right? It was quite revolutionary because it opens up an entirely new world of ideas for treating many other diseases. It was also very, very quick to make it through the approval process; from the time it was submitted to the FDA and approved was a short 4ish months due to the overwhelming success it had and need of it. Anyways, they are currently studying a similar drug for a different gene type, which I have one copy of. They are in Phase 3 right now with people with two copies of the gene, and the next stop is FDA approval. So, hypothetically, in two or three years, it is very possible that this drug will be approved if all goes according to plan. It would be the closest thing we have to a cure. And it is also very possible that I could start taking this drug and gain back a bit of lung function while also almost grinding my CF to a halt (almost.) That wouldn't mean my lungs would miraculously be normal again, but it would slow the decline by a LOT and push off the transplant possibility for a while. Again, that would be a-mazing in the truest sense of the word. Ergo, donations are a great way to help out.

Another is to consider becoming an organ donor. You can help many people by becoming one. I know it's a big choice, but being a person who will most likely be the recipient of one, the cause is becoming closer to my heart. Plus then you get a cool little heart on your license ;).

The last way to help is just prayers and support. But that probably goes without saying :).