I believe that Dennis O’Leary, one of three Co-Chairs of the Dc Brewers Ball, said it best by highlighting a beer analogy that everyone could get behind. When Cystic Fibrosis Foundation began 30 years ago life expectancy for a human was like a hardly filled glass of beer. Over the years, through donations and the gains made in science they hope that everyone will see a day where the success rate of treating someone with CF will be more like an overflowing glass of beer (cue Dennis filling up his beer glass till it is bubbling over and falling on the stage to a ruckus applause).
Said in a bit more detail: a few decades ago, most people with CF didn’t live long enough to attend elementary school. Through the efforts of the CF Foundation, the life expectancy of a person with CF has doubled in the last 30 years. Today, many people with CF are living into their thirties, forties, and beyond. Recent drug discovery and development programs have yielded drugs that have changed the course of CF. For the first time, two FDA-approved therapies (Kalydeco and Orkambi) treat not just the symptoms of the disease ,but the underlying genetic defect for a small percentage of the population. Recent research shows great potential for additional treatments that will similarly affect a larger percentage of people with CF. Although great progress has been made, there’s still a lot of work to do to put a cure in the hands of every person with CF.
Whether you have been personally affected by the disease or support finding a cure and extending the lives of those diagnosed, the feeling of camaraderie in the National Building Museum was palpable. The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment and ensuring access to high-quality, specialized care. Nearly every CF drug available today was made possible because of foundation support. Through its efforts, the life expectancy of a child with CF has doubled in the last 30 years and research to find a cure is more promising than ever before.
The most powerful part of the evening was a moment when Jordan and I were standing in front of a poster of a smiling little girl and a man stopped in his tracks and was looking right at us. At first we didn’t understand until we realized he wasn’t looking at the two of us but rather through us at the beautiful little girl on the poster behind us. Sensing that we might be interested why he stopped he just said, “that’s my neighbor’s little girl”.
What it made me realize right in that moment is how large the ripple effect can be of this disease affecting just one person. It made me realize, once again, to always be kind because you have no idea what struggle someone might be going through.
The important thing when looking at a cause such as Cystic Fibrosis, whether you are attending the event, volunteering or a part of the foundation itself, is to be sure to get involved. In a city the size of Washington DC where a lot of the everyday struggles seem to focus on politics, traffic or cost of living it is a respite from all of that to give your time to something that can help better someone’s life. Therapeutic even.
The human spirit is truly recognized when we can offer our energy for a positive purpose and connect with other human beings. If you’re looking for a good way to start your 2018 and connect with others, volunteering for events and causes like Cystic Fibrosis is great way to begin.
David Lowe
