Reblog: Envisioning a Bright Future for Our Survivors

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

10.11.19 #alssymp

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

10.10.19 Our Next Adventure Is To…

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…

10.07.19 CRLI Graduates

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

10.3.19 Rare Across America

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

9.25.19 CRLI Research Ambassadors

Have you ever heard someone talk and and know you had to get closer to them? Aside from Fallon and Seinfeld, I'd never had that overwhelming desire before I heard Dr. Bedlack speak at ALS Advocacy in June. Y'all this mans voice is more smooth than his wardrobe. I leaned over to Jaci and said, … Continue reading 9.25.19 CRLI Research Ambassadors

9.24.19 Can You Dig It?

"Tag Team, back again, Check it to wreck it, let's begin. Party on, party people, let me hear some noise" Team SunnyStrong is back for our 5th Walk to Defeat ALS! Register HereSaturday, October 19, 2019 Trinity Park in Fort Worth 9 AM | 3 mile course "I'm takin' it back to the old school … Continue reading 9.24.19 Can You Dig It?

9.13.19 Sunny Loves Tom

This one is tough. My heart is broken. I am thankful for ALS bringing my Fruges into our life, but I'll be damned if I feel anything short of outrage that it took Tom from us, specifically away from Nancy, Emily, Aimee, and Grayson. Especially Grayson. From day 1 of his diagnosis, everything Tom faced … Continue reading 9.13.19 Sunny Loves Tom

9.11.19 Cowtown Affair

Jennifer Corbett and Family, our 2019 honorees, invite you to join us on September 18th for our second annual Cowtown Affair - a cowboy chic event showcasing Fort Worth's commitment to creating a world without ALS. Last year's event raised more than $28k for ALS Texas. And if you recall, we participated in some unique … Continue reading 9.11.19 Cowtown Affair