It’s been an exciting week leading up to the kickoff of ALS Awareness Month! Yesterday the FDA approved a new medication for ALS called Qalsody. It’s the fourth ever approved drug and the first for gene specific mutations of ALS. May is ALS Awareness Month in the US and, in partnership with Her ALS Story, … Continue reading 4.26.23 2nd Annual Fight ALS Film Fest
May is ALS Awareness Month
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
5.11.22 Serenity Now
Friday was clinic day and it was a marathon. Mah and I left Hico at 7AM and got back at 5PM. Not how I'd prefer to spend a Friday but we're going to discuss how to approach the day from a different perspective. Instead of complaining about a 6AM alarm, I'm choosing to celebrate that … Continue reading 5.11.22 Serenity Now
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
4.25.22 Fight ALS Film Festival
Mark your calendars and join us in May for ALS Awareness Month. Register here. Zoom links will be sent out each week. Meetings to discuss each movie are at 7PM CDT on the dates listed below. May 1: So Much So Fast, with a discussion moderated by Carol Hamilton. Carol was inspired by this film … Continue reading 4.25.22 Fight ALS Film Festival
5.26.21 We Can’t Wait
Yesterday I had the opportunity to give my patient testimony to the FDA. It was recorded in case you missed it. “In the immediate future, we will be asking the FDA to recommit to its 2019 ALS clinical trial guidance, to explain how it has implemented it, and how it plans to get effective treatments to people with ALS faster.We will be asking for a detailed … Continue reading 5.26.21 We Can’t Wait
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