2.23.23 Sunny Goes to DC

I’m failing y’all in the weekly blogs, so get ready for some double doses. Last week I got the opportunity to go to Washington DC in the name of ALS advocacy. I was able to attend because of generous support from the sale of Super Bowl squares and winners who donated their winnings back. Thank you to everyone who helped make this possible.

Lots of firsts on this trip. This was my first trip back since covid and post January 6th chaos so plenty of mixed emotions about how everything was going to play out. Also, we tried to break my friend Anne after dinner the first night. I’ll spare you the bloody picture but her finger got stuck in Brooke’s chair and it was full blown insanity.

Pre bloodshed

On Tuesday we did a full day conference with More Than Our Stories with 70 other advocates both online and in person. Such an incredible event and empowering to hear advocacy action items from people who are truly in the fight. I always love meeting people in person that I know well from online communities. It’s humbling to be back in real life after the pandemic. And of course we wrapped with drinks at a nearby tavern.

On Wednesday we went to Capitol Hill to talk to our legislators about our well honed and improved asks. In my previous trips these meetings were organized for me by the host organization, but this time I got to pop into four different offices and meet with staffers on the fly. It was fun to roll in, wearing sequins of course, and introduce myself and my ask. Afterwords, thanks to Senator Cornyn’s office, Anne and I were able to do the Capitol tour which was amazing.

Also on Wednesday, Brooke’s article published on the Today Show website so we got to celebrate her celebrity status with tacos. Be sure to read the article here: I thought I was too young to have ALS. Then I was diagnosed at age 33

Here’s a quick recap of the trip and again thank you to everyone that made this trip happen.

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