Global Genes 2018


My favorite place to be someone born sick is Global Genes RARE Patient Advocate Summit.

What is that, you ask?

“As the largest gathering of rare disease patients, caregivers, thought leaders and other rare disease stakeholders in the world, the RARE Patient Advocacy Summit is an unparalleled opportunity to forge meaningful connections with other rare advocates and take home actionable strategies and tools to accelerate change.”

- Global Genes


Last year, Mr. Pennington and I tooled down to fabulous Orange County the night before to catch Owl City at House of Blues Anaheim. Yay!

Hello Seattle

Cross that off bucket list.

The next morning, we were late to the opening speaker because the breakfast at the AC Hotel was so good. Oops. No matter. Even arriving late, I started weeping right quick. Rachel Callander’s story was so beautiful.

Watch more of the sessions here.

Mr. Pennington and I go to Global Genes RARE Patient Advocacy Summit every year. We can’t imagine we would ever outgrow this event.

I come here to cathart about my disabled life. I save my tears all year for this, a place where I feel understood. Mr. Pennington gets acknowledgment for his secret job as my caretaker. These aren’t things other people in our lives understand.

It is a much broader perspective than an Ehlers-only conference. You can learn so much by understanding other diseases. We get to meet families who are trying just as hard as we are to get a better life, in spite of their own wacky, terrifying, life-ruining condition.

We get all updated on the latest science in the treatment of single-mutation caused rare genetic disorders, which most rare disease are.

At Global Genes 2018, I met Lara Bloom in person, and wasn’t that an honor. That humidity really messed up my hair. Saw old friends, Tony Howell and Justine Case.


We gave up our hotel room the last day because we planned to drive back home to Los Angeles that night. I had to change in the car for the RARE Champion of Hope Awards.

We took a pic, classy broad that I am.

Here I am sliding my compression hose over cheap pantyhose, the easy way to get them on. Use donning gloves to ensure you don’t tear them. I love blood pressure.

Why yes, that is my sequined mini I brought to Paris. In it, I danced with French fireman on Bastille Day 2017. That is the French fireman’s fundraiser, their version of the pancake breakfast. Magnifique!

I was doing a sober Global Genes 2018, as I get very emotional at the RARE Patient Advocacy Summit. I hate my feelings, and they serve a lot of great California wine.

You only know if you can stand your feelings unmedicated if you try. My one hope was not to drink this bottle of wine. It was hard because the presenters at this dinner reallllllly ripped my heart out. They made me so glad to be alive, with my rotten disease and all the horror of it. Life with a life-limiting disease. F*ck! I feel tears welling up in me eyeballs now.

Accomplishment achieved! Did the whole event stone cold sober. My feelings didn’t kill me. How about that.

Register for 2019 here. Hope to see you there.


9/18/2019 - 9/20/2019