Monday, October 6, 2014

Don't. Tell. Anyone.

I have a great idea. Let's have a meeting. Let's invite all of the brilliant minds in CF - the scientists, the care providers, the people who dedicate their lives trying to understand the science to make this life better. Let's bring them all together, all roughly 4000 of them. Let's ask them to present what they know, to talk to one another, to create posters that display all of their amazing and literally life-saving work. And let's not tell anyone else about it. If you want to know about it, you have to have a medical degree. And even then, don't talk about it. Don't take pictures of what you're learning. Don't tweet what you hear. This is a closed meeting.

How will we learn more? How can we grow? How can we collaborate with the real experts, the patients and families who have their heads in the clouds and their feet on the ground! They're the ones willing to do anything! When they do get their hands on a medical journal, it sits at their bedside where they read it and re-read it and then read it again. They're the ones who have funded this research. They should have a right to it! They should get to decide what everyone gets to see and how everyone can share it. Even the work funded by drug companies! I am an investor. I need to take control of my kids outcomes. I have a right to this information. If anyone is going to accelerate the pace of this, it's us! Show us the damn data. I cringed when I saw a "no photos disclaimer" on the app for the upcoming meeting I'm attending. I wish it also said what would happen if you were caught breaking this rule so that I could make a educated decision on whether it was worth it.


  1. And the real kicker? Ban the people WITH THE DISEASE YOU'RE TRYING TO CURE/CONTROL from attending the meeting in person. And if that's not enough, absolutely ENSURE their lack of involvement by disabling the technology that enables them to remotely participate. Because...just imagine what would happen if THE PATIENTS AND FAMILIES got their hands on...the research

  2. Her article is very interesting , and I wait for the newest article article , thanks .