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 (ALS) and motor neuron disease.

Y’all know I geek out on the science and technology that’s discussed at these events, check out some of my report from the International ALS/MND Symposium in Scotland here, so hearing about the latest and greatest was amazing. Here is what was presented:

•Modifiers and Mechanisms for TDP-43 and C9orf72 mutations in ALS. Aaron Gitler, PhD (Stanford University)

•A needle in a stack of needles: Atypical TDP43 splice isoforms in ALS. Sami Barmada, MD, PhD (University of Michigan)

•TDP-43: a crucial target for therapeutic development in sporadic ALS. Clotilde Lagier-Tourenne, MD, PhD (Massachusetts General Hospital)

CRLI was awesome. We made new friends, hugged on old ones, learned about new and exciting research and therapies in the pipeline for ALS, and had some fun in the sun.

Upon graduation from ALS Research Ambassador Training Program, we have been turned loose to bring truth, validity, and patient insight into the wild world of social media rumors and false claims of hope. We shared positive and negative experiences in research, talked with top leaders in the field, and discussed our plan for implementing what we learned in our circles of influence. Most importantly, we formed a group of accountability partners, all with a vested and personal stake in curing ALS, to lean into and love on through our efforts. We shared laughs, stories, hugs and encouragement for the sunnier days ahead.

Speaking of sunnier days, we got to take turns on these Tracked Mobility Chairs down the beach. So much fun to see everyone’s faces as we took on the obstacles at 3 miles per hour.

We had the best view from our balcony and watched the storms blow in on our last night.

Thankfully my handsome husband got to join for the trip and we enjoyed soaking up the sun in October.

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