May is Cystic Fibrosis Awareness month, and on May 19th, Team Ethan is again participating in the 2012 Great Strides Event. What is Great Strides? It's one of the biggest fundraisers the Cystic Fibrosis Foundation runs to raise money for new treatments and research towards a cure of this awful fatal disease. Two years ago last month we found out that our son who was about 3 weeks old at the time, was diagnosed with Cystic Fibrosis. Talk about a shock to the system! Since then this will be our 3rd year participating in this event that directly helps over 70,000 people who have CF worldwide.
What is Cystic Fibrosis? Well, it's an inherited chronic disease that affects the lungs and digestive system. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
This year with the help of fundraisers like this, a new drug (VX-770) has been approved by the FDA that is showing great results. This drug actually targets the defective protein (CFTR) which is the underlying cause of this disease. This is great because all of the other treatments my son and others has focuses on the symptoms. I read a story of a woman who lives in a 2 story house and she would have to do her laundry upstairs. Prior to taking this drug she would have to catch her breath using an oxygen mask before continuing on. Shortly after taking this new medication she noticed that she wasn't out of breath as often. This new drug targets a specific CF mutation that isn't all that common. My son carries the most common mutation and right now, they are working on finding away to help people who has this mutation.
Last year with the help of Octopus Overlords and GamingTrend, we raised $4,480. Our team was in the top 5 in Sacramento, and to be honest, it was because of you. Complete strangers took the time to care not only about my family but for people all over the world. It still blows me away that people I have never met gave their hard earned money to a complete stranger (to be clear, it doesn't go to me, it goes to the Cystic Fibrosis Foundation). It's an amazing feeling.
This year again, I'm asking for your help, our goal is $5,000 just like last year, we are currently sitting at $1,775.
The foundation receives no government funding and they have been rated one of the best organizations on being the most effective with their funding.
If you would like to donate, you can visit my site athttp://www.cff.org/Great_Strides/KenDean
Ken, Erin and Ethan