February 2022 Foundation eNews

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Foundation News

New Date for the Hope Through Caring Gala!

Join us in-person (or virtually) on our new date, Saturday, May 21, for our annual Hope Through Caring Gala at the Radisson Blu Aqua Hotel in Chicago. Our honorees will be Lisa F. Wolfe, MD, of Northwestern Medicine, and Amylyx Pharmaceuticals’ co-founders Joshua Cohen and Justin Klee.

The Hope Through Caring Award will be presented to Dr. Wolfe, a world-renowned pulmonologist at our Lois Insolia ALS Clinic at the Les Turner ALS Center and a pioneer in the field of ALS respiratory care. She has built one of the most respected neuromuscular pulmonary programs in the country.

The Harvey and Bonny Gaffen Advancements in ALS Award will be presented to Joshua Cohen and Justin Klee. Josh co-invented AMX0035 and has overseen the growth of Amylyx from its start as a concept dreamt up in a dorm room, while Justin has overseen the development of Amylyx’s novel platform and therapeutic for neurodegenerative diseases, AMX00035, from initial testing through clinical trials.

Join us in honoring these amazing individuals for their contributions to the ALS community. In-person capacity will be limited. Registration is now open!

Register

 

 

Are you a Veteran Living with ALS? Make Sure to Register for the February Webinar in our ALS Learning Series!

For many years, studies have shown that veterans are twice as likely to develop ALS compared to those who have not served in the military. In our upcoming ALS Learning Series webinar, ‘Everything You Ever Wanted to Know About ALS and the Veterans Administration,’ David Kvarnberg, MD, Clinic Director of the ALS Interdisciplinary Clinic at Edward Hines, Jr. VA Hospital, will discuss the link between military service and ALS, as well as the approach that the VA takes in caring for veterans.

This free webinar will take place on Thursday, February 24 from 12PM – 1PM CT. Dr. Kvarnberg will provide useful information to veterans with ALS and their caregivers wanting to know more about VA benefits and care for veterans living with ALS including:

  • Clinical care provided by a VA doctor or clinician
  • Medications and supplies from the VA pharmacy
  • Home Health Care
  • Physical Therapy
  • Occupational Therapy
  • Speech Therapy
  • Hospice & Palliative Care
  • Social Work
  • Mental Health
  • Durable Medical Equipment

Dr. Kvarnberg joined the Hines VA Hospital in 2012, seeing veterans with general neurology complaints and complicated neuromuscular problems. He is the Clinic Director of the Hines VA ALS Interdisciplinary Clinic, which he started in 2013. Since June 2021, he has been the Acting Chief of the Neurology Service at Hines.

Join us on Thursday, February 24 from 12PM – 1PM CT. The webinar is a free, public service of the Les Turner ALS Foundation. We look forward to seeing you!

Thank you to Mitsubishi Tanabe Pharma America and Control Bionics for sponsoring this webinar.

Register

 

 

To view past webinars in our ALS Learning Series, visit https://lesturnerals.org/support-services/als-learning-series/

Thanks to Cytokinetics for our Second Communications Fellowship Grant!

We are pleased to announce that the Foundation will, once again, be a recipient of the Cytokinetics’ Communications Fellowship Grant. We are grateful to Cytokinetics for the trust and confidence they place in our work and our partnership to help those impacted by ALS.

“We appreciate working with the Les Turner ALS Foundation, a strong partner that values open dialogue and the spirit of collaboration, and exemplifies steadfast dedication to serving the ALS community,” said Mary Pomerantz, Cytokinetics’ Director of Advocacy. “Cytokinetics is honored to support the Les Turner ALS Foundation through the Communications Fellowship Grant Program in the creation of new resources that meet the complex needs of people with ALS.” To read the full press release, visit the Cytokinetics website.

The Communications Fellowship Grant is aimed at assisting patient advocacy organizations in expanding their reach, awareness, and community engagement. This grant will allow us to sustain and grow our ALS Learning Series which features monthly educational webinars that focus on empowering those living with ALS by providing them with the latest tools and resources to navigate their diagnosis.

Five grants in the amount of $20,000 each were awarded this year to patient advocacy organizations focused on ALS, heart failure, and hypertrophic cardiomyopathy. We congratulate our fellow award winners!

Visit our website to learn more about the ALS Learning Series.