August 2022 Foundation eNews

Emily Cerbone Foundation eNews, Home Page

 

Foundation News

Show Your Support at the ALS Walk for Life on September 24! 

The ALS Walk for Life brings together thousands of people…and among them are thousands of incredible stories.

Lori 2021 WalkLori couldn’t wait to return to the Walk last year after only being able to participate virtually in 2020. Although she is living with ALS and uses a wheelchair, she walked across the finish line with a little help:

“My nephew asked me if I wanted to walk across the finish line. I said, ‘Sure, let’s go!’ so he and my younger son helped me cross the finish line on my feet. It was good.”

Registration is open for this year’s ALS Walk for Life on September 24 at Soldier Field! Come out and show your support for people living with ALS like Lori, and cross that finish line with us. Click below to register!

Register

Webinar: An Overview of Voice and Message Banking for People Living with ALS

For people living with ALS, the ability to speak is often compromised, so voice banking is recommended. Voice and message banking for people living with ALS can be an emotional, overwhelming, and seemingly complicated task to navigate. However, it doesn’t have to be.

Join us on Thursday, August 18 from 12-1 p.m. (CT) for the next webinar in our ALS Learning Series, “An Overview of Voice and Message Banking for People Living with ALS.” Community Education Manager Anne Marie Doyle M.A., CCC-SLP will discuss the differences between voice banking, message banking, and double-dipping, as well as, how to get started, what equipment is needed, and the future of voice recognition technology.

Prior to joining our Support Services team, Anne Marie was a speech-language pathologist for nearly 13 years at the Shirley Ryan AbilityLab (formerly known as The Rehabilitation Institute of Chicago), working primarily with adults with neurological diagnoses. She is a member of the American Speech-Language & Hearing Association, and their Augmentative and Alternative Communication Special Interest Group.

The Les Turner ALS Foundation is proud to offer this webinar at no cost to the ALS community. Thank you to Mitsubishi Tanabe Pharma America and Cytokinetics for sponsoring this webinar.

Register

Patient Fellows Program at International Symposium on ALS/MND

The 2022 International Symposium on ALS/MND will be held virtually on Dec. 6-9. People who have been diagnosed with ALS or MND are invited to apply for the Patient Fellows Program and participate in the largest annual symposium dedicated to ALS/MND research. Fellowships have also been reserved for a caregiver and a non-symptomatic gene carrier.

Fellowships include prepaid registration to attend the symposium and opportunities to share valuable insights and experiences with other people who are living with ALS and ALS researchers from around the world.

Applications can be completed online. The deadline is Friday, August 19. If you participate, please notify us – we’d love to share your story!

Submissions are Open for the ALS March of Faces 

March of Faces 2021Living with an ALS diagnosis impacts not only the person, but also their family and friends who will carry that person in their hearts for the rest of their lives.

In an effort to create more ALS awareness in the Chicagoland area, as well as to honor and celebrate our loved ones who are living or lived with ALS, the Foundation displays the ALS March of Faces banners at the ALS Walk for Life and other events throughout the year. These banners contain the names and photos submitted by the family and friends of individuals who were diagnosed with ALS.

Submit a name and photo by August 22 to be included in this year’s banners. There is no cost to participate, but donations are welcome to help fund ongoing ALS research, support and much-needed care for people living with ALS.

Submit