November 2022 Foundation eNews

The Les Turner Symposium on ALS brings together leading ALS researchers, clinicians, and most importantly, people living with ALS and their families. Not only does the symposium provide the latest research updates on ALS, but it gives attendees time to ask questions and engage with the people at the forefront of ALS research and clinical care.

«Participating in the symposium provides those of us with ALS the unique opportunity to ask questions and engage in a live discussion on the latest ALS research with a diverse community of doctors, researchers, and their teams,» says Frank Granata, who is living with ALS and will present opening remarks. «I think that by being there and seeing their enthusiasm will help fuel hope not just for those of us with ALS, but anyone else who might be diagnosed with ALS.»

This year’s symposium will take place on Nov. 7 from 8 a.m. to 4 p.m. The morning will include presentations from leading ALS researchers and clinicians, including keynote speaker Nicholas Maragakis, MD, of Johns Hopkins University, while the afternoon features a Clinical Conversations Panel with clinicians and ALS advocates.

Take advantage of this opportunity to be a part of the conversation in ALS research and clinical care. The symposium is free and open to the public, but registration is required. If you are unable to join us in person, the symposium will be livestreamed.

November is National Family Caregivers Month and none are more special than those who care for people living with ALS. We honor and thank caregivers for all that they do, and can’t forget that they need support for their own health and well-being, too.

Our guides on caregiving and caregiver self-care can help caregivers navigate daily life, find support, and create an environment that minimizes stress and conflict while helping caregivers meet their own physical and emotional needs while avoiding burnout. We also have an ALS Learning Series webinar on “Navigating the Challenges of Caregiving for People Living with ALS”.

“After listening to the webinar, I felt that I wasn’t alone and wasn’t the only one struggling with stress as a caregiver,” says Vivianne, an ALS caregiver. “I’ve felt physically and mentally exhausted, and sometimes hopeless for not being valued. I live in Peru, and here we don’t have much information or support. I plan on sharing this webinar with the rest of the ALS caregivers I know.”

Remembering our loved ones

Thank you to all who took part in our Celebration of Life on Oct. 22 where we remembered and honored loved ones who lost their lives to ALS.

This moving tribute, presented by our Support Group Facilitator Anne Lidsky, PhD, recognized not only the lives of those that were lost, but also the loved ones who were left behind and continue to grieve.

If you were unable to attend the memorial service, the recording is available on our YouTube page.

What are your running goals for next year? We have spots open for the Team Race for ALS in the 2023 Bank of America Chicago Marathon. Join our team, reach a new personal best, and raise funds to support the Les Turner ALS Foundation and our vision of a world free of ALS.

Jaime Kaufman and her husband Nathan ran as part of our team in the 2022 marathon in honor of their friend Mitch.

“I would absolutely encourage others to consider running for Team Race for ALS!” says Jaime. “People need to know more about ALS and PLS (primary lateral sclerosis), and we need to do our part to create more awareness and funding. Running this race is an excellent way to challenge yourself on a much bigger scale, and know that at the end of the day, all the training and the race itself is nothing compared to what people like Mitch experience.”

Marathon spots are limited and will go quickly, so contact us with any questions and sign up now to claim your place on this amazing team.