I met Cheryl Kingsford in 2020, days before public meetings were eliminated due to COVID-19. We were both advocates on Capitol Hill...she spoke on behalf of Ectodermal Dysplasia; I was speaking on behalf of Hereditary alpha tryptasemia, or HATS and Lipedema.
One doesn't make a connection with everybody one meets at a conference...especially one as large as Rare (Disease) Day on Capitol Hill (Washington, DC, USA). So it's a wonder that we hit it off. We didn't even have the same disorder--we met on the first day and explained each of our disorders. We then connected each day for a bit.
Finally, on the last day, she and I hung out for a couple hours at the Rare Artist event. She introduced me to her friend Elizabeth, who also had Ectodermal Dysplasia. The two of them, Elizabeth's parents and I all went to dinner at Union Station together--one of my favorite memories of the week.
In the intervening years, one of the things we had in common was hiking and photography. Her hiking with her dog, Gina, resulted in such beautiful photos, that it made me want to go to Idaho!
7 months after the conference, it was so great to hear that Cheryl and Elizabeth's bill was getting some traction.
Here are some of the articles about Cheryl, and her obituary tribute:
- https://idahonews.com/news/local/cheryls-smile-boise-woman-overcomes-rare-genetic-disorder
- https://www.relyeafuneralchapel.com/tributes/Cheryl-Kingsford
When my mother passed away, Cheryl sent audio of a duet she and her sister had sung at her mom's funeral. I hadn't even realized that we had singing in common. One year we were hoping to get together, but they didn't offer scholarships that year. And this summer, Cheryl came to DC to advocate again. She didn't have enough time to come down to Richmond to see me. We hoped it would fall into place, but It apparently wasn't meant to be.
This is one of the last things Cheryl posted, in September of 2024.
I'm guessing that everything makes sense for her now. I'm really grateful that we got to know each other. Cheryl was a really special lady and she made such an impact in her very short life. I'm grateful to have known her, if only for 4 years.