12.3.19 Cheaters for Everyone

Well, it happened. I'm not proud of it, still embarrassed of it, and it's shadowing my every move. I have been scarred forever. It was awful. It was hysterical. It happened. Everyone, I'd like to introduce you to Behemoth. This fine piece of machinery is as powerful as it is monstrous. We decided to leave … Continue reading 12.3.19 Cheaters for Everyone

11.29.19 This is for you, pALS

I've removed all the unnecessary hair, and what's remaining has been waxed, cut, and colored accordingly. My suitcase is bulging with who knows what, and I can already think of 5 things I'll have to get there. You'd think I'd be a pro by now, we'll see what happens. We are soon to board the … Continue reading 11.29.19 This is for you, pALS

10.30.19 Provision

Y'all, I'm going to be completely honest for a second. No sugar coating, no pretending, no nothing. Are you ready for this truth bomb? I have absolutely no idea what I'm doing. Like none. Zip. Zero. Nada. We're coming up on my 5 year anniversary of being diagnosed with a disease that was supposed to … Continue reading 10.30.19 Provision

10.11.19 #alssymp

29th Annual International Symposium on ALS/MND Patient Fellow Program Background: "The key to defeating MND lies in fostering strong collaboration between leading researchers around the world, and sharing new understanding of the disease as rapidly as possible. This was the MND Association’s rationale behind the creation of the International Symposium on ALS/MND." - MND Association … Continue reading 10.11.19 #alssymp

10.10.19 Our Next Adventure Is To…

Y'all this is insanity. I am humbled to be accepted to represent the ALS community on a global stage, and Perth, Australia is just going to be mindblowingly beautiful. Click HERE to hear from our fearless leader, Cathy, about the Patient Fellows Program and the importance of having patient voices represented at this symposium. Scotland … Continue reading 10.10.19 Our Next Adventure Is To…

10.3.19 Rare Across America

We talked about Rare Across America, remember? Well they announced yesterday that 303 meetings took place during the Summer Recess. More info is included below from RDLA about all of the exciting updates that came out of these meetings. I was lucky to participate in 3 of those meetings and on top of making new … Continue reading 10.3.19 Rare Across America

9.25.19 CRLI Research Ambassadors

Have you ever heard someone talk and and know you had to get closer to them? Aside from Fallon and Seinfeld, I'd never had that overwhelming desire before I heard Dr. Bedlack speak at ALS Advocacy in June. Y'all this mans voice is more smooth than his wardrobe. I leaned over to Jaci and said, … Continue reading 9.25.19 CRLI Research Ambassadors