Hey, She Got to Fly Off to DC Again!

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.

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(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.

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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!

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So, for more in depth coverage, here is the link to Kathy’s blog:

http://www.katseyeview.blogspot.com/2015/11/36-hours-in-dc.html

 

Thank you Kathy!

 

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The Best Mother-in-Law Ever

I’m way behind.

If 2015 was a pleasure cruise, 2016 is a freight train. It’s been roaring in, fast and furious, with what I believe will be many good things. But for now, I’m just trying to apply the brakes for a bit.

There are many events I’ve wanted to write about. The longer I put it off, the more thoughts inside me are building up. It’s time. I need to start.

We got a call while at a party on New Year’s Day, in the evening. Howard dropped everything and went to be with his sisters and his mom, who was not doing well. She was failing fast and they knew it was time. Thankfully, he was able to arrive in Fresno before she passed away in the first couple of hours of January 2nd. She was born 4 days before my dad, on September 21, 1921. She was 94.

Audrey was a very special person to me. When I met her, back in 1980, I liked her instantly. I knew my new friend, Howard, came from good stock. His parents were good people. My mom always told me that you don’t marry the man, you marry the family, too. I liked this family. And that’s good. Because I really liked Howard.

She was always kind and thoughtful. I know that her son could have married a better housekeeper, but Audrey either seemed to understand me or was very good at forgiving me for my failings. She never made me feel like I was lacking. She simply dived in to help when she was visiting. Always ready to hold a baby, to fold laundry, to help cook.

She was one of the most positive people I know. She battled breast cancer in 1983, and I don’t think I can recall one day when she wasn’t more concerned about everyone else than she was about herself. She just gave of herself all the time. She made it through that tough time, and I think that positive spirit fueled her recovery. I learned a lot from her.

My parents became friends with Audrey and Will, my father-in-law,who passed away in 2007. It was just another thing I loved about my in-laws. It’s as if Howard and I got to be ‘match makers’ in the friends department. They did things together…without us.

Audrey made the most amazing lemon meringue pie. I didn’t realize how good it was until I tasted other lemon meringue pie. Audrey made hers from scratch. It was the best. She always said she was a ‘plain cook’, nothing fancy, mostly meat and potatoes. And I will give her that, there were not a lot of exotic meals. But oh, was her food good! And there was always plenty of it. You could not go hungry when you were at Audrey’s house.

Audrey

We were going to my brother’s house in Chico for Christmas this year, so we made a trip to Fresno on the 16th of December to have a little Christmas dinner-in-advance. This would give us time with Audrey, and Howard’s sisters, Heidi and Nadine. It turned out to be a busy time for my business, although we don’t normally get really busy until about the 20th. Howard said he understood if I couldn’t make it. It would mean 6 hours travel time alone, in addition to our visit. I told him there was no way I would miss this. That’s why I have a staff. Family is important to me. And she was the last parent we had. I’m really glad I went. Rory was home from school for Christmas break and she got to come too. We are pictured above on that day. It was our last day together.

Sweet, wonderful Audrey Ann Tank, rest in peace. I loved you so much.