A Rare Collection – Exhausted and Energized

Once Upon A Gene

A Rare Collection – Exhausted and Energized

March 16, 2023

A Rare Collection – Exhausted and Energized


A Rare Collection – Exhausted and Energized

There’s power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, sharing a story with a common theme. 


Annie Kennedy, Rare disease advocate with the EveryLife Foundation

I have a quote in my office that says “she took her power back without permission”. As I stood in the back of the legislative conference during Rare Disease Week, the opening speaker asked a room full of more than 600 advocates to, by a show of hands, show who was in Washington for the very first time for Rare Disease Week to advocate on Capitol Hill. I realized that more than 50% of the room was raising their hands and I immediately thought of that quote. More than 50% of that room was taking their power back for the very first time. That was exhilarating. There were many other exhilarating moments throughout the week. While the week was absolutely exhausting, full of meetings, documentary screenings and conferences, it was exhilarating. More than 600 advocates traveled and came together for an exhilarating week during Rare Disease Week, advocated together and shared stories. We took our power back and changed the rare disease landscape forever.

Sarita Edwards, Rare mama and co-founder of The E.WE Foundation

Our son, Elijah, was diagnosed in utero with the rare disease Edwards Syndrome, or Trisomy 18. Events like Rare Disease Week are important to me because it’s an opportunity to raise awareness about Elijah’s diagnosis and champion legislation we believe can help families like ours. Several weeks ago, I celebrated Rare Disease Week, alongside 600 rare disease advocates and 300 patient organizations in Washington, DC. To say I was energized is an understatement. The days were long and full of content and conversations, and though I was energized, I was also exhausted. I was exhausted watching advocates push themselves to limits on behalf of the rare community. It was exhausting walking from building to building, speaking with legislators who are in charge of the decisions that affect our day-to-day lives. I was exhausted thinking about how much we believe all of this makes a difference, and hopeful it actually does. Exhaustion is the evidence of my energy being used properly. I was exhausted, but I’m energized and I’m just getting started as a rare disease advocate. 

Abbey Hauser, Ehlers-Danlos patient and Rare Disease Advocate and Board Member with Team Telomere

There were two versions of me that existed in Washington, DC last week. There was the excited, engaged, educated and enthusiastic patient advocate. There was also the rare disease patient who laid alone on their hotel room floor at the end of each night, taking extra pain medications, hoping that the next day would go better for their body. Both versions are equal and valid to my story, yet most people only see the excited and engaged advocate that I am. I know the quiet moments that I laid on my hotel room floor are part of what makes me such a powerful patient advocate. I left Washington, DC exhausted beyond words and my body was pushed to its limits. Being a patient is hard, but being energized is worth the exhaustion.


The E.WE Foundation

Team Telomere

EveryLife Foundation





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