I'm supposed to be in DC today. I'm supposed to be storming Capitol Hill. I'm supposed to be worn smooth out after a full day of legislative meetings. I'm supposed to be fighting for the ALS Community alongside other pALS. I've always had extreme FOMO - fear of missing out - and today I'm drowning … Continue reading 10.17.19 FOMO
We met as a committee last week to wrap up the 2nd Annual Cowtown Affair that was held on 9.18.19 and learned that over $58k was raised at this year's event. That's double from last year. The event sold out, the Chicken Shit Bingo was a hit, and lots of love was poured over families … Continue reading 10.15.19 Cowtown Affair Success
Team SunnyStrong is legit killing it. Saturday is going to be awesome, we're going to cause a ruckus and take a stand against ALS. If you ordered a shirt they will be at the walk - otherwise I'll mail out orders next week. Here are the details that you need to know for Saturday: … Continue reading 10.14.19 Ready to Walk?
Envisioning a Bright Future for Our Survivors BY RICK JOBUS IN COLUMNS, NOTES FROM THE ALS FRONT - A COLUMN BY RICK JOBUS. From time to time, a comment in response to one of my columns reveals that the commenter has lost someone to ALS. The first time it happened, I paid it little mind. Subsequent occurrences aroused … Continue reading Reblog: Envisioning a Bright Future for Our Survivors
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
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…
Coming home from Florida is always tough, it's just sooooo pretty. Kenneth and I flew in early so we could attend the scientific symposium during the 2019 NEALS Consortium. "The mission of the Northeast ALS Consortium (NEALS) is to rapidly translate scientific advances into clinical research and new treatments for people with Amyotrophic Lateral Sclerosis … Continue reading 10.07.19 CRLI Graduates
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
We're right at 3 weeks out from the FW Walk to Defeat ALS and there's 3 things you need to do: Register for the Walk by Joining Our Team HERE 2. Order your SunnyStrong Shirts HERE 3. Plan to Join Us for the After Party HERE We've got some exciting things planned for this year's … Continue reading 10.1.19 It’s Walk Month!