As I have attempted to play catch up, I have found the best way to talk about my trip to DC in November is to let someone else do it. Kathy Koontz will be my guest columnist, so to speak. With her permission, I have provided the link to her blog. In it, she describes the amazing meeting that took place with the FDA in DC on November 16, 2015. She summarized the events in greater detail and far more eloquently than I could have done. Thank you, Kathy!
It was a meeting with members of the Amyloidosis community: researchers, doctors, patients and care givers. It was part of a plan to meet with various groups, especially among those of the rare disease world, to better meet the needs for new drugs and treatments. The difficulties in obtaining new treatments in the ‘rare community’ are many. There are fewer people for studies, and fewer patients who need drugs to be developed that are incredibly costly. It’s one of those things I had little interest in, until it became a huge part of my life! When I got the word that I would be able to go, I got my plane ticket and planned a very fast trip there and back.
(I had a 22 miler to run that morning, and I was on a red-eye that night…it’s all good!)
I was excited to be part of something this important. And very excited for another reason as well. I was going to be able to meet Kathy in person! We had met on facebook and found we had so many things in common, in addition to the fact we both have Amyloidosis. Kathy is an accomplished cyclist, and has ridden 180 miles in one weekend to raise funds for cancer, more than once, and this is after her stem cell transplant in 2013. Truly a soul sister! And then there is the fact that she has a cat named Rory and I have a daughter Rory. I could go on and on…she’s a real badass on skies too. Meeting her was everything I hoped it would be. We had a great time during the little over 24 hours we go to spend together.
Kim and Kathy, at last!
I was very excited to meet Carole Harber and Joanne Campbell as well.
The stories told at the meeting were, as Kathy said, both heart warming and gut wrenching. I thought I had heard it all before. That’s not even close to reality! There are so many variations and experiences, even though we have the same disease. And there is so much to be learned. And I think the FDA learned a lot too. That’s a very good thing.
I was told by Dena Heath, the leader of our local support group, that the FDA considered this meeting, organized by the Amyloidosis Research Consortium, to be one of the best organized of all the meetings they’ve had with various disease groups. It will be considered the standard by which all meetings in the future will be formatted. It was a success on many levels!
So, for more in depth coverage, here is the link to Kathy’s blog:
Thank you Kathy!