It's All I Can Do

Tuesday, October 21, 2014

After the school bus scooped Lily up, it was off to the track for Dan And I. But first? You guessed it, McDonald’s for a breakfast burrito meal and a bacon, egg biscuit. I scarfed my breakfast down as I walked the first lap or two. Food down, hammer down, ali-oop, and I began running.

Shortly after my Garmin buzzed to indicate that I had completed four miles, a voice appeared. Since I can’t see faces, and if I see bodies they look like ghostly images, I gotta go with voices appearing. : ) it was a reporter from Fox 6.

I mentioned to him that I had been interviewed live at the Fox studios in Minneapolis, but he informed me that his “Fox” is not the same as that “Fox.” His “Fox” is owned by the Tribune Corporation, as in Chicago Tribune. It is a “feel good” station. He also told me that when he saw “this story” he had to jump on it because when he was in college, he and his roommate produced a documentary on a friend of his roommate who attended the same school and who lost his eyesight within one year (that being from his freshman to his sophomore year).

The reporter is also a runner, so a great deal of the interview was done while he was running alongside of me. When he completed the interview, I had completed ten miles on my Garmin. I run about a twelve minute mile on a track, so that will give you some kind of indication how long he was out there interviewing me, but most of it was videoing me running. I sometimes wonder if when reporters do that, that they are testing to see if I can run longer distances, instead of just one or two laps. I mean, it just seems kind of funny they shoot so much of me running around and around on a running track. He’s not the only one to do this.

Later in the afternoon, the high school cross country team came out to run. I stopped and asked one of them if it was alright for me to be out there. It was, and I took the outside lanes while they ran. They told me it was alright for me to continue on the inside lane, they could move over, but I thought it best for them to be able to run all out, and did they ever, at least a few of them. Wow, were they cruising.

Some of them wrapped up their run early, which seemed to be a surprise to one of them, as he asked, “Are you done already?” to one of his CC teammates.

Got my twenty in, and Dan picked me up from the track. End of another great day of running on the track.

Officer Kelly DeJonge told me that her Sergeant, Sergeant Kip Butler, had a thirteen or fourteen year old daughter who has cystic fibrosis. She sent him my phone number.

After eating dinner, I was in need of a nap. No sooner did I lay down then the Sergeant called me.
Wow, this man impressed me with what he knows about cystic fibrosis. If that wasn’t enough, he and his wife have one other child, a son who has autism. They have two children, a daughter with cystic fibrosis and a son with autism. Think they have their hands full? I never asked to what degree their son’s autism is.

He told me that he was surprised to know how much his daughter knew about her disease in her young years. She wrote a letter discussing how hopeful she was, as one drug, Kalideco, actually helps roughly 1,500 of the 30,000 to 35,000 affected with cf. The future for those with cf, like herself, is looking brighter.

She is not helped by the drug, but there is another drug awaiting approval from the FDA. It will help approximately 40 to 50 percent of those with the disease.

Kip read the letter and sent it to the Vertex Pharmaceutical Company, the manufacturer of Kalydeco. They, in turn, gave Kip and his daughter an all-expenses paid tour of their laboratories.

His daughter also put together a video about what it is like to live with cystic fibrosis. Please check it out here or on our Face Book page. It is well done. http://www.youtube.com/watch?v=0drB-8AFltM&sns=em

Kip educated me on aspects of the whole Cystic Fibrosis Foundation/pharmaceutical industry relationship that I had not known. It is quite a story in itself on how much the CFF met with resistance from so many pharmaceutical companies until they met with the people from Vertex.

This story is just another of what can happen when failures become valuable lessons and opposition is pushed through. It is the story of human perseverance.

It reminds me of the quote my brother-in-law Steve quotes often. “There are those who make things happen. There are those who watch things happen.

And there are those who wonder, what happened?” The Cystic Fibrosis Foundation and its president are definitely making things happen. Watch it happen! Or, … .

Total miles today, 21.15
Milwaukee, Wisconsin.

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