5.3.19 Grand Unveiling

Last night was amazing! HUGE thank you to everyone that came out, that joined us virtually, and for all of the love and support. I finally got to take my Courtney Patton face shirt to a Courtney Patton show! She absolutely rocked it and her sweet husband Jason Eady was a fun surprise. I love … Continue reading 5.3.19 Grand Unveiling

4.24.19 Collaborations for ALS Awareness Month

2019 officially marks the 27th year that the United States recognizes the month of May as ALS Awareness Month. The purpose of an awareness campaign generally includes increase concern by informing the targeted audience, creating a positive image, and attempts to change the past behavior. The first year, 2015, I hadn't publicly announced my diagnosis … Continue reading 4.24.19 Collaborations for ALS Awareness Month

4.15.19 Shirts For All

May means ALS Awareness Month. ALS Awareness Month means you need SunnyStrong Swag. Willie agrees. Shirts are available now in the SunnyStrong store. Long sleeve, Short sleeve, Bro Tank styles in Purple, Yellow, and Grey. Cutting this order off on Tuesday, April 30th so order today! We'll order again in October for the Walk. You … Continue reading 4.15.19 Shirts For All

Reblog: From Balloons to Bubbles

Reblogged from ALS News Today From Balloons to Bubbles: How I Breathe Well with ALS MAY 29, 2018 BY DAGMAR MUNN IN COLUMNS, LIVING WELL WITH ALS - A COLUMN BY DAGMAR MUNN. I know I have no control over how quickly or slowly my ALS progresses, but I can try to hold off the negative effects that … Continue reading Reblog: From Balloons to Bubbles

Reblog: Oral Edavarone

I wrapped up Round 9 of Radicava Ridiculousness last week and was VERY excited about these findings 🙂 Reblogged from ALS News Today Treeway’s Oral Formulation of Edavarone for ALS Shows Promise in Phase 1 Trial MAY 31, 2018 BY JOSE MARQUES LOPES, PHD IN NEWS. An experimental oral formulation of edavorone for amyotrophic lateral sclerosis (ALS), called TW001, … Continue reading Reblog: Oral Edavarone

Reblog: Right to Try Law

Reblogged from ALS News Today US ‘Right to Try’ Law Meets with Mix of Praise and Criticism, Including Among Those with Rare Diseases JUNE 4, 2018  BY LARRY LUXNER IN NEWS. As President Trump signed the recently passed Right to Try legislation into law in a White House ceremony, Jordan McLinn of Indianapolis tried twice to embrace … Continue reading Reblog: Right to Try Law