I'm one of only a few people in the Rockford area to have ALS and at the moment the youngest for sure. It's incredibly isolating to be one of the only people fighting this battle in an area. Being in DC this weekend allowed me to meet guys just like me that have to battle this shitty disease everyday as well. Pat Quinn, who started the Ice Bucket Challenge and who loves baseball, just like me. Jay Smith, a music connoisseur from Austin, TX who relies heavily on music to cope, just like me. Tim Shaw, ex-NFL star who is always up for a good time and has a few speeding tickets on his record, just like me. Justin Dodson, an Iraq vet from Chicago, who doesn't mind cursing on Capitol Hill, just like me. And many other guys and gals that might be older than me or have nothing really in common with me, but who had awesome attitudes and strength that I look up to and can rely on whenever I need a pick-me-up.
Not only did I meet awesome pALS (patients with ALS) this weekend, but amazing supporters from the Greater Chicago, St. Louis and Wisconsin area. Mike, Melissa, Amanda, Melanie, Sam, Bruno, Julie, Ann, Maryilene, the list goes on. All of these amazing people had some tie to the ALS community. They lost a friend, parent, sister, brother, or are just sick of losing people to this awful disease and are sick of the lack of support and treatment out there that they made it their calling to support the community. I had a blast taking on Capitol Hill, drinking beers, seeing the sights, and leaning on each other for support with these people this weekend. I made friends I'll have for life in these people.
Michelle and I were able to see the sights together. The Washington monument, WWII monument, which was so cool, the reflecting pool, Lincoln of course, Vietnam monument and got within 4 blocks of The White House, someone important must have been there. We had dinner with an old friend at a DC institution, Old Ebbitt Grill, where I had fantastic crab cakes and a great beer or two from Atlas Brewery. The ALS Association took care of us and put us up in a beautiful room, made sure accommodations were there so I could use the shower and rented a fun scooter for me to get around way faster.
The Hill. All the ALSA chapters hopped aboard buses for the Hill on Tuesday where we broke off into groups to talk with our senators, congressmen and representatives. My group had five meetings where we met with senators Durbin and Kirk, as well as congressmen Kinzinger, Dold and Ducksworth. We let them know the importance that they support the ALS Registry, designate another $10 million towards research, which is a pebble in the bucket, to support the Steve Gleason Act that guarantees that we have access to augmentive communication devices, and to inact the Dormant Therapies Act, which in a nutshell allows big pharm companies to reinvestigate treatment plans and drugs that have been shelved due to patent rules. If it gets through congress it will be huge for us!
Warriors are losing their ability to communicate, walk, hug their loved ones, breathe. Warriors are dying. That's flat out unacceptable. A man with ALS told me this weekend, "today is the worst I've ever felt, and the best I'll feel for the rest of my life." That sucks. That is unacceptable for far too many of us to feel that way every morning. Something must be done and you best believe a fire was lit under my ass to make an impact on this community, not just for my sake, but for all the warriors I met this weekend.