January 2023 Foundation eNews

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Foundation News

Thank you

We can’t thank you enough for your generosity during our end of year fundraising campaign. Your donations are making a profound impact not only on the lives of those living with ALS and their families, but also on ALS research and access to clinical care and clinical trials. Because of you, we can continue providing valuable resources, education and support to people living with ALS and their families.

A special thanks to the Walter Boughton Foundation, Willow Springs Charitable Trust and an anonymous donor for their matching gifts – and to every donor, no matter what amount they were able to give, who rose to the challenge and helped us move closer to a world free of ALS.

Mark your calendars

We have many exciting events coming up in 2023, beginning with the Hope Through Caring Gala on Saturday, Feb. 18 at the Raddison Blu Aqua Hotel in Chicago. The Gala brings together Chicago’s top minds in ALS research and care, business, academics, and philanthropy for one of the city’s most elegant and most prestigious black-tie optional events of the year to help us raise awareness for ALS and honor people who have made a significant impact on the ALS community.

And there’s much more ahead. The ALS Walk for Life will return to Soldier Field in September and the Bank of America Chicago Marathon will feature our Team Race for ALS runners, along with many other community events.

We are also looking forward to the Les Turner Symposium on ALS in November, as well as our monthly ALS Learning Series webinars in 2023. The Young ProfessionALS Group (YPG) will host exciting events like their annual NCAA Bracket Challenge in March and their signature event, All in for ALS Casino Night, in November.

It’s going to be a great year for the ALS community!

Sharing our work around the globe

Photo: (left to right: Andrea Pauls Backman, Rochelle Walwer, Anne Marie Doyle and Lauren Webb) 

In December, members of the Foundation joined over 50 other organizations representing 35 countries worldwide that came together to fight ALS and Motor Neuron Disease (MND) at the annual meetings held by the International Alliance of ALS/MND Associations. The Alliance is a global network of ALS/MND associations informed by people living with ALS and their caregivers that acts as a global gateway to connect members to external stakeholders and helps them thrive.

The Foundation is a founding member of the Alliance. Lauren Webb, LCSW, and Anne Marie Doyle, MA, CCC-SLP, presented the progress of My ALS Decision Tool™ to their counterparts around the globe; Rochelle Walwer, LCSW, presented a poster on our new caregiver materials and support groups; CEO Andrea Pauls Backman was honored for her service on the Alliance board of directors; and retired Executive Director Wendy Abrams gave remarks on the founding of the Alliance 30 years ago.

Visit the Alliance website to learn more about its year-round educational programming, annual meeting and other activities.

Tell us your ALS story

How can your story contribute to understanding ALS, its causes, and how to fight it?

Sign up for our ALS Learning Series on Thursday, Jan. 19. from 12-1 p.m. CT when Dr. Paul Mehta, principal investigator for the National ALS Registry and the Center for Disease Control and Prevention (CDC), will present “Why Your Participation in The National ALS Registry Matters”.

The National ALS Registry collects, manages and analyzes data about persons with ALS. Researchers can use registry data to look for disease pattern changes over time and identify common risk factors among people living with ALS. Dr. Mehta will discuss how to join the National ALS Registry, what information they collect and why, and the type of research the registry is conducting.

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 the Gilbert and Jacqueline Fern Foundation for sponsoring this webinar.


Empower yourself with the My ALS Communication Passport to Quality Care

If you are living with ALS and happen to fall and are taken to the emergency room, does the staff know not to give you oxygen? Does your food need to be cut up into small pieces before you eat? Does your new caregiver know that when you ring the bell, you need to use the bathroom?

These are all questions that your caregivers and medical staff should know the answers to, especially if you have difficulty communicating. Our My ALS Communication Passport to Quality Care is designed to share not only your personal and medical information but also key points about your day-to-day routine and how you wish to be cared for, saving the trouble of having to provide this information time and time again.

Take control of your care by filling out the My ALS Communication Passport to Quality Care. This form is available for printing or in fillable PDF format. Just remember to update your information as your condition and needs change.

Learn more.