5.30.18 Tuesday the 15th

This was THE BIG DAY! We headed to Capitol Hill to advocate for ALS. Here's what our asks are for each person we met with. Our group consisted of myself, Carlie, and Pete Quortrup.   We got to meet with each offices staffers. Here's who we met with: Rep. Sam Johnson (R) [TX-03] Rep. Joe … Continue reading 5.30.18 Tuesday the 15th

5.29.18 Monday the 14th

I forgot to tell y'all about the General Session we attended on Sunday covering Care Services. Dr. Clifton Gooch of USF discussed the collaboration behind the multidisciplinary clinic approach and it's impact on patients. I attend this kind of clinic under the care of Dr. Heitzman and love every aspect of this model. Dr. Gooch … Continue reading 5.29.18 Monday the 14th

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 … Continue reading 5.26.18 Sunday the 13th

5.24.18 Cousin Taylor

Meet my cousin, Taylor. He's pretty great and is doing great things for lots of people. His brand, Surf & Turf Golf was recently featured in Fore Magazine - see the article here. "At a time when the game and its leadership seems opaquely caught between honoring traditions and finding ways to bring in new … Continue reading 5.24.18 Cousin Taylor

PSA #3: “Good Night”

Jason Walker was diagnosed with ALS 14 years ago. He started dating his wife three years after his diagnosis, and they have been married for 4 years. Their daughter, Eloise, was born 17 months ago. He has used a tracheotomy and feeding tube since just after his wedding. He says the experience of appearing in … Continue reading PSA #3: “Good Night”

PSA #2: “Little Things”

Donna Boring is a mother of three who was diagnosed with ALS in 2008. She has been an ALS advocate for years. Her Walk to Defeat ALS team, Donna’s Diva’s, will be competing in their sixth walk to raise awareness and funding this year, and she plans to attend The ALS Association’s National ALS Advocacy … Continue reading PSA #2: “Little Things”