10.6.22 New Drug

The FDA announced approval on Thursday of a new drug called Relyvrio. This is especially exciting because this is only the third approved medication to fight ALS. Tuesday I realized it had been 5 years since I started Radicava and after sharing my original post I’ve learned just how much I confused everyone. My sincerest … Continue reading 10.6.22 New Drug

8.26.22 ICER Testimony

Last Friday I got the opportunity to contribute my patient testimony durning the public comments session of the ICER Midwest CEPAC Public Meeting on AMX0035 and Oral Edaravone for Amyotrophic Lateral Sclerosis. This is always something I enjoy doing because I want the people making decisions about ALS to know who those decisions impact. From … Continue reading 8.26.22 ICER Testimony

6.20.22 Kendra Scott Giveback Party

I’d like to personally invite you to contribute to the Her ALS Story Wellness Retreat by shopping our Kendra Scott Giveback event.  During our party, 7/20 - 7/22, 20% of sales online and in store using the code: GIVEBACK-CGOSH will go to offset various costs of the retreat.  This coming fall, we are organizing a … Continue reading 6.20.22 Kendra Scott Giveback Party

6.14.22 Lou Gehrig Day Success

Lou Gehrig Day was entirely too much fun. We had a great turnout and got to meet other pALS in the fight. I'm always proud of this community, the love and support that flows constantly is good for the soul. Mark your calendars for June 2, 2023 for the 3rd Annual Lou Gehrig Day. Lou … Continue reading 6.14.22 Lou Gehrig Day Success

5.3.22 Lou Gehrig Day with the Texas Rangers

Last year was the first annual Lou Gehrig Day celebration. Since the Rangers were on the road and I’m extra, Jennifer and I flew to Denver to celebrate. Thanks to the Hilliard family I got to do a pregame interview with AT&T SportsNet RM and Marc Stout. And thanks to my favorite Morby’s we got … Continue reading 5.3.22 Lou Gehrig Day with the Texas Rangers