Post #2 of our National Volunteer Week focus on the charities that hold a place in my heart.
As children, we’re exposed to many good and bad things. As parents, you hope that all those exposures combine to create a decent adult that will carry on your name. My co-blog writer this week, Elissa Plastino and I both participate in Great Strides to benefit the Cystic Fibrosis (CF) Foundation. We do this, not just because it is a good cause, but because of the inspiration of another co-worker, Mike Hart (one of those decent adults). Mike, in turn, was inspired at a very young age by his childhood friend Jill Roberts, or as he likes to refer to her “the Amazing Jill Roberts”…and amazing she is.
The average life expectancy of a CF patient is currently 37 years. Jill, through dedication to her treatments and overall healthy life style, has done amazing things that a lot of us probably could not do. Jill continues to participate in stair climbs and run 5K races…amazing feats as there was a time in college that Jill could not walk (while carrying an oxygen tank, by the way) from the car to her classrooms without stopping. One reason this is possible is that 14 years ago this past Thanksgiving, Jill received a most precious gift–the gift of life. She received a perfect pair of lungs from an anonymous donor. As a result, she continues to inspire Mike and the people in Mike’s life. Jill’s dedication to just survive and take that next breath is what makes Mike step back and reflect on his life and say if Jill could beat the odds that she has been dealt (she was not to live to see elementary school), he can do what he can to help find the cure for this devastating disease. And so can we.
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). 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.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people (like Jill) with the disease can now expect to live into their 30s, 40s and beyond.
It is a very exciting time to be involved with CF. Why? Just this year the Foundation and Vertex pharmaceuticals had a major breakthrough on a drug now namde Kalydeco that will help correct the underlying defect that causes CF for about 4% of the population. While this is not a cure and will have to be taken daily as a maintenance drug, the Foundation now has the road map on how to work on the underlying defect and can start to “cure” a bigger population. This development is HUGE for the foundation.
So, what can you do? Coincidentally, it’s Great Strides time again for us in Missouri, and in many places across the country. If your company has a team walking, join them by walking alongside them or donating. Individual walkers are also welcome! Elissa just finished a great walk in Cape Girardeau, MO, and I’ll be taking steps to help in a few weeks in St. Louis.
St. Louis Walk-Carondelet Park, Boathouse May 5, 2012 (http://www.cff.org/Great_Strides/dsp_DonationPage. cfm? walkid =7947& idUser =375286)
St. Peters Walk-Laurel Park May 19, 2012 (http://www.cff.org/Great_Strides/dsp_ DonationPage.cfm?walkid=7949&idUser=375286 )
Find a walker/team http://www.cff.org/great_strides/findwalker/
Spread the word http://www.cff.org/great_strides/spreadtheword/