November 2020 Foundation eNews

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Empowering through ALS Education

We are excited to launch our new online learning series aimed at empowering our ALS community through the latest information and insights. Educational webinars and interactive Q&A’s covering a diverse array of topics, from telemedicine to respiratory care, will be hosted monthly by the Foundation’s Support Services team and clinicians from our Lois Insolia ALS Clinic at Northwestern Medicine. The learning series will also include blog posts and articles on ALS research, clinical trials, caregiver support and so much more.

Kicking off this new online program is Lisa Kinsley, MS, CGC, senior genetic counselor at Northwestern University’s Department of Neurology, on Tuesday, November 17, at 12 pm CST. Lisa is well-known to many of our Les Turner ALS families through her work at our Lois Insolia ALS Clinic.

Her webinar will cover genetics basics as well as the inheritance patterns of both sporadic and familial ALS and the process for genetic testing for both symptomatic and pre-symptomatic familial ALS patients. Sign up to attend Lisa’s webinar here>>

Congressional Gold Medal awarded to Stephen Michael Gleason for his work raising awareness of neuromuscular diseases and injuries – January 15, 2020, Statuary Hall, US Capitol

Save the Date for the 2021 Hope Through Caring Gala

It’s our honor to announce Steve Gleason as the Harvey and Bonny Gaffen Advancements in ALS Award honoree at our first virtual Hope through Caring Gala on Saturday, March 20, 2021!

Steve Gleason played for the NFL’s New Orleans Saints from 2000-2008 and in January of 2011, he was diagnosed with ALS. With his mission to show that people living with ALS can not only live but thrive after their diagnosis, Steve, along with his wife, Michel, formed Team Gleason, to accomplish just that.

As an advocate on the national stage, Team Gleason has brought ALS to the forefront. In 2018, the Steve Gleason Enduring Voices Act was signed into law to ensure the availability of life-sustaining communication devices for those in need.

Steve is also a founder of Answer ALS, a global research project dedicated to developing and implementing a unified strategy to stop ALS, in which the Foundation is a partner.

Individual tickets and other sponsorship packages for the virtual Hope for Caring Gala will be available for purchase in January 2021. Learn more about the Hope Through Caring Gala>>

Last Call to Join the 10th Annual Les Turner Symposium on ALS

Don’t miss your chance to hear the latest in ALS research and clinical care at our 10th Annual Les Turner Symposium on ALS on November 9.

Alongside members of our Les Turner ALS Center at Northwestern Medicine, the Symposium will feature ALS clinicians and researchers from the University of Washington, University of Arizona, University of Zurich and the Mayo Clinic of Jacksonville.

Plus, joining us from the Healey & AMG Center for ALS at Massachusetts General Hospital is Sabrina Paganoni, MD, PhD as keynote speaker. Dr. Paganoni is co-principal investigator of the HEALEY ALS Platform Trial, which is currently enrolling at our Lois Insolia ALS Clinic and the principal investigator on the Amylyx Pharmaceuticals Phase II/III CENTAUR clinical trial.

Members of our Center contributing to the Symposium include: Evangelos Kiskinis, PhD, Hande Ozdinler, PhD, Han-Xiang Deng, MD, PhD, Robert Kalb, MD, Colin Franz, MD, PhD, Senda Ajroud-Driss, MD and Lisa Wolfe, MD. Register to attend the Symposium and explore the abstracts being presented>>