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Perhaps you have a family member, close friend or colleague who is living with cystic fibrosis. Or maybe you'’re a runner who is looking to add some meaning to your next marathon. Or you might have been moved by the story of the Esiason family’'s own battle with CF. Whatever your motivation, welcome. We offer a variety of ways for you to get involved and to make a difference in the lives of the 30,000 Americans living with CF.

A Letter From Boomer: Causes for Celebration

05/31/2012

Dear Friends,

Some of the events of the past six weeks have got me thinking a lot about how much brighter the future for the cystic fibrosis community is today than it was when I first learned about the disease nearly 20 years ago.

To start, my son, Gunnar, celebrated his 21st birthday in early April. While that occasion is a milestone for most young adults, it had even more meaning for my son and the rest of our family and friends. When Gunnar was diagnosed with CF in 1993 at the age of two, we weren’t sure he would live to see adulthood, and now he is facing a future that can include a career, marriage and a family, and just about anything else he wants to do. I am thankful each and every day for the advances the scientific community has made in order for Gunnar and the thousands of others living with CF to enjoy long and healthy lives.

Speaking of advances, you probably have heard already that my good friend Jerry Cahill received a double-lung transplant in mid-April. It amazes me how far we’ve come since the 1980s, when the first lung transplants to achieve long-term survival rates were performed. Jerry was out of the hospital in a little more than two weeks and already is reporting FEVs of 85 percent – a huge improvement over the 27 percent he lived with before the transplant.

Jerry will turn 56 in June and is in better shape than many people half his age. Jerry’s dedication to rigorous exercise and strict compliance with CF therapies for so many years laid the groundwork for his transplant and have given him a leg up in recovery as well.  But it actually was Jerry’s organ donor – and the donor’s family – who made the transplant a reality.  I can’t stress enough the importance of registering to be an organ donor.  With more than 114,000 people waiting for transplants, and thousands of them dying each year before they can undergo the surgery, it’s critical for all of us to register, and to discuss that decision with our families.

As another CF Awareness Month draws to a close, my hope for all of us in the CF community is that the coming year brings us more good news from the researchers and scientists, not to mention more celebrations of life and everything it has to offer.

With warm wishes,

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