Writing this letter has been on my mind for months, and I have apparently mastered the art of procrastination. As Blaise Pascal once said (loosely translated from the original French) I would have written a shorter letter, but I did not have the time.
Our Great Strides walk is this Sunday, and I can’t believe another year has gone by!
I am sending this missive from 37,000 ft, on a flight home, after a long week of work in California. The internet is actually fast up here, the second generation of in-flight wifi, and this one is satellite-based. Not so long ago, connected work stopped when I got on the plane, and I had a few minutes of uninterrupted time to focus on something. I would read, listen to music, and catch up on any off-line tasks on my list. Now I can do anything that I can when sitting in front of a desk - except take a phone call (and I hope that day never comes). In this world we are always connected, and innovation comes faster and faster.
This was tough year for our family. King (and Ginger) spent 28 days in the hospital in November and December, after sinus surgery to remove polyps, battling the bacteria in his lungs, and GI issues. For Emma Virginia the hospitalization meant spending weeks separated from her mom and brother, and from me as I was travelling for work. Ginger homeschooled King until March, so we could avoid the worst of flu season. As for King, as social 7 year old, the isolation was as bad as the illness.
Balanced against this experience is an amazing amount of hope, and that hope is provided by innovation.
This year, Ginger and I were able to witness some of the innovation first-hand. We visited Vertex, a pharmaceutical company in San Diego, and took a tour of their labs. We were able to meet the researchers and scientists who are working to develop the next generation of drugs that treat the root cause of CF. One of these drugs, a triple combination of small molecules, could help King, and could be on the market as soon as Q1, 2020! Needless to say, the positive energy from that visit will sustain us for a long time.
The chemistry and biology that we saw were amazing, but I was in awe of how far we have come. Donated dollars from the Cystic Fibrosis Foundation funded the development of the Vertex products that are on the market. They created the patient registry that allows us to test those drugs quickly and effectively. The dollars have been used to create the care center model to provide the best care for people with CF. These dollars continue to fund research into new treatments that are being developed today.
Ginger said it best in a letter she wrote earlier this year:
“If you have been following our story since King's diagnosis at birth, you know that we started this journey on a wave of hope when the first drug was created to treat the root cause of CF! That drug only worked for a small number of CF patients, but it gave us hope that King’s time would come. The moment is here and we have countless people to thank. Dollar by dollar, volunteer hour by volunteer hour, study by study, people from all over have pulled together to get us to this place. Together, we did this, and this year we have the chance to get even closer to the finish line.”
Please join me in supporting the CF foundation.
Thank you for continuing to support us!