5.26.18 Sunday the 13th

6am flights after a two hour power nap are tough, but we made it work.

Luckily, Tanner was on our flight and he literally took care of everything – including drink tickets 😉 Everyone needs a Tanner. We learned that Texas is considered “Tanner Country” and after 4 days watching him work and seeing his passion for the cause, it was obvious why.

We got to the hotel in time to order room service and nap. First meeting we attended was called Advocacy 101 which solidified the truth that I was not prepared for the task at hand. We discussed the different asks we were making in our meetings at Capitol Hill. We learned about the process it takes for an item to become a bill. We learned about why we were moving on certain asks that had momentum rather than starting out from scratch. We learned about the difference in making asks under me NIH and the DOD, because the benefits of both allocations have tremendous impacts on research. I’m very thankful that ALSA provided this information because without it Carlie and I were lost. Also, I’m thankful to each of you that signed the letters – we made quite the showing.

The opening session brought familiar faces that I was excited to meet:

Y’all I felt like a groupie, these are big names in the fight against ALS and we are just chatting it up. I get emails from these people about the strides they’re making and the countless hours of dedication to the cause, but to hear them speak about the impact of my attendance and how I’ve helped the cause, wow just wow.

We also got a chance to meet the other conference attendees from our state. ALS has many forms of abuse on it’s victims and effects everyone differently so it was interesting to meet families just like mine, ALS warriors just like me who are from the same place. We had over 20 representatives from Texas there to raise our voices and fight ALS together.

Sunday the 13th was also Mother’s Day. I’m lucky to be surrounded by so many powerful, wonderful, strong willed, bossy Mothers. Especially my sweet Carlie who gave up her day with this cheesy smile to be in DC with me.

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