3.6.19 Capitol Hill

We had 6 meetings on Tuesday, SIX! It was an exhausting day, but so worthwhile. Kacy and I slept very well that evening, and Garth tried to die on us but TJ Maxx saved the day by letting us charge him up on the way home. We learned the importance of emphasizing the -sks in “asks” otherwise it sounds like something else completely. As you can imagine there were lots of different asks that are important to ALS and the Rare Disease community, so we had to narrow it down a bit. Kacy and I discussed the different topics, and agreed to focus primarily on the ALS Disability Insurance Access Act – bipartisan legislation eliminating the five-month waiting period for SSDI benefits for people diagnosed with ALS.

Texas Tuesday Coffee with Senator Ted Cruz gave Kacy and I a chance to meet Sen. Cruz and tell him about our reason for visiting. Later we got to meet with his staffer and discuss the specifics of our ask.

Our meeting with Senator John Cornyn’s staffer brought many commonalities: he also grew up in Central Texas (Waco), he is childhood friends with one of my girlfriends from grad school at Texas State, he has been on the front lines for ALS Awareness for years because of his fraternity, Phi Delta Theta, which was also the fraternity of Lou Gehrig.


Armadillos have become a recent trend for SunnyStrong so seeing this bad boy in Congressman Babin’s office was a welcome sight.


Our fifth meeting of the day was with Congresswoman Johnson’s staffer brought great conversation and awareness for our group.


It’s always good to see my girl Suzi in Congresswoman Kay Granger’s office for our sixth and final meeting on Capitol Hill.


As you can imagine, there were thousands of people on the Hill advocating for different items, so it was amazing to find a familiar face in the crowd. Dr. Jackson and I met in Scotland during the International Symposium. She runs the ALSA Certified Treatment Center in San Antonio.

If you have a second, please consider sending a quick email to your members of Congress and the House to join in support of this bill.

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