Instead of doing an ALS walk this year we’re hosting the Y’all Ball. I cannot tell you how excited I am to party with everyone in Hico! Games, silent auction, trivia, snacks and pizza - what more could you want? Oh and it’s BYOB. Honestly I didn’t know what “thrift store chic” looked like until … Continue reading 10.14.22 Y’all Ball
Awareness
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
9.29.22 Girl Gang
By now y’all should know about my girl gang, Her ALS Story. We spent some time together in Madison, WI and it was everything we dreamed it would be. 15 women diagnosed with ALS before the age of 35 came together from around the country for a few days of love, laughter, support, and all … Continue reading 9.29.22 Girl Gang
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
8.22.22 August Clinic Update
Do you ever tell people something in your head but forget to hit send? I've always been at a hefty level of insanity, but I swear it’s been worse since I had covid in January. I have MANY blog posts to purge from my head and I plan to get those out to you over … Continue reading 8.22.22 August Clinic Update
7.29.22 Week 5 Fight ALS Film Festival
TransFatty Lives Watch Film Watch Film Discussion Enlightenment by Shotgun TransFatty Lives was the best, most epic film to wrap up ALS Awareness Month and the Fight ALS Film Festival. If you haven't watched this film yet, go now and watch it. HURRY! "It is an honest film, and Patrick is funny and he has … Continue reading 7.29.22 Week 5 Fight ALS Film Festival
7.28.22 Week 4 Fight ALS Film Festival
The Theory of Everything Watch Film Watch Film Discussion Meet Katrina Hawking This discussion was a real treat as Katrina Hawking told stories of meeting her father in law and traveling with someone famous. I learned so much about this person who was larger than life and also Granddad. I just found out Stephen Hawking … Continue reading 7.28.22 Week 4 Fight ALS Film Festival
7.27.22 Week 3 Fight ALS Film Festival
Hope on the Horizon: An Expedition for ALS Watch Film Watch Film Discussion Meet HARK "I just hope other people don't have to go through what we went through" Quinn Ragan We've raised over $3.5 million and it has all been given to A.L.S. families. This film is a true testament to what crazy tthings … Continue reading 7.27.22 Week 3 Fight ALS Film Festival
7.26.22 Week 2 Fight ALS Film Festival
VICE: Die Trying Watch Film Watch Film Discussion Meet Angelina Fanous People with disabilities don't just sit at home and stare at a wall. We lead interesting, meaningful and valuable lives. This was tthe best 2nd edition of the Fight ALS Film Festival because it shows the tenacity it takes to live with this disease. … Continue reading 7.26.22 Week 2 Fight ALS Film Festival
7.25.22 Week 1 Fight ALS Film Festival
So Much So Fast Watch Film Watch Film Discussion Meet ALS TDI This film makes you proud to be a human This was the perfect film to kickoff the Fight ALS Film Festival because it's all about the love and determination of a family. We met a lot of the Heywood family in our discussion, … Continue reading 7.25.22 Week 1 Fight ALS Film Festival
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