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, “I gotta meet him.” A quick google search will show you all of this guy’s awesome accolades and contributions, but more importantly I want to draw your attention to the praise from his patients and the descriptions of his threads. Dr. Bedlack is awesome. We swapped tattoo stories, and he gushed over my girl Andrea’s Swallows.

“Even my neurologist (also Tim’s doctor) has a swallow on his hand to remind him to tell patients at least one hopeful thing during their visits. That’s how rare hope in ALS is.”

Before I tell ya what I came here to tell ya, I want to introduce you to a cool project of Dr. Bedlack’s called ALS Untangled.

“ALSUntangled reviews alternative and off label treatments (AOTs), with the goal of helping people with ALS make more informed decisions about them.”

This is the coolest approach EVER.

So, of course I needed to find a way to get back into this man’s space. 2 day conference in Florida? Sign us up! Kenneth and I are so excited to join this elite group of advocates during the first week of October.

From the Northeast Amyotrophic Lateral Sclerosis website:

“The ALS Clinical Research Learning Institute (CRLI) is an annual two-day program dedicated to educating attendees on clinical research and therapy development and empowering this group to be advocates for ALS clinical research. Becoming an ALS Research Ambassador provides attendees with an opportunity to become even more active in the effort to find a cure for ALS.”

I can’t wait to share everything we learn.

One thought on “9.25.19 CRLI Research Ambassadors

  1. Love Dr. B! He’s my doctor and advocacy mentor with a tireless desire to cure ALS. You will thoroughly enjoy the NEALS conference. My friend, Joe (who recently lost his wife) say hello to him for me.


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