March 2024 Foundation eNews

Ashley RosenbrockFoundation eNews, Home Page

Advancements in ALS Award: Dr. Merit Cudkowicz

At this year’s Hope Through Caring Gala, we’re thrilled to be honoring Dr. Merit Cudkowicz with the Harvey and Bonny Gaffen Advancements in ALS Award.

“Dr. Cudkowicz is an outstanding role model for all of us working in clinical research,” notes Dr. Senda Ajroud-Driss, Director of the Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine. “Her drive and dedication to ALS research has transformed the field and led to innovative clinical trial design and to the discovery to new ALS therapies.”

Dr. Cudkowicz spearheaded the Sean M. Healey & AMG Center for ALS, co-founded the Northeast ALS Consortium (NEALS), and initiated the first ALS Platform Trial, significantly accelerating therapy development.

Her contributions to ALS treatment have been pivotal, playing a crucial role in the approvals of Relyvrio and Qalsody (tofersen), which mark among the most significant advancements in the fight against ALS in decades. Her work, particularly in the tofersen studies, has made gains in targeting ALS caused by a mutation in the SOD-1 gene, showing promising results in slowing progression of the disease.

On Saturday, April 13, we’ll honor her and other exceptional people from the ALS community at the Hope Through Caring Gala. Join us and celebrate an extraordinary individual whose life’s work has brought hope, understanding, and care to so many.

Face Off Against ALS with the Chicago Wolves

Join us on March 10th for an afternoon of hockey and hope as the Chicago Wolves face off against the Milwaukee Admirals at the Allstate Arena in Rosemont, IL, for ALS Awareness Day!

This game is a great opportunity to stand together and make connections in the ALS community. In addition, by purchasing your tickets through our exclusive link you’ll not only get to attend an AHL hockey game, but also contribute to a vital cause. A portion of the proceeds from ticket sales will benefit the Les Turner ALS Foundation, supporting multidisciplinary care for people living with ALS and their families.


ALS & Communication Guide — Now in Spanish

Our ALS & Communication Guide is now accessible for both English and Spanish speakers. This comprehensive resource is tailored to assist individuals with ALS, their caregivers, and families in overcoming communication challenges presented by the disease.

ALS can significantly affect speech and breathing muscles, leading to a range of speech changes from mild to severe. It can also weaken the fingers, hands, and arms, impacting the ability to write or type. However, with advancements in technology, there are numerous options available for maintaining meaningful communication with your loved ones.

This guide delves into the speech alterations associated with ALS and provides practical tips for adapting to these changes, emphasizing the importance of working closely with your ALS Care Team to tailor communication solutions that best fit your needs.

Nuestra guía de ELA y Comunicación ya está disponible tanto en inglés como en español. Este recurso integral está diseñado para ayudar a las personas con ELA, sus cuidadores y familias a superar los desafíos de comunicación presentados por la enfermedad.

La ELA puede afectar significativamente los músculos que se utilizan al hablar y respirar, lo que puede conducir a cambios en el habla desde leves hasta severos. También puede debilitar los dedos, manos y brazos, afectando la capacidad para escribir o teclear. Sin embargo, con los avances en la tecnología, hay numerosas opciones disponibles para mantener una comunicación significativa con sus seres queridos.Esta guía profundiza en las alteraciones del habla asociadas con la ELA y ofrece consejos prácticos para adaptarse a estos cambios. Destaca la importancia de trabajar de cerca con su Equipo de Cuidado de ELA para personalizar soluciones de comunicación que se ajusten mejor a sus necesidades.

Lee la guía

ALS Learning Series: The Role of Multidisciplinary Care in ALS

Join us for our upcoming ALS Learning Series webinar on Thursday, March 28 at 12:00 p.m. CST. This session will delve into the crucial role of multidisciplinary care following an ALS diagnosis, highlighting the collaborative efforts needed to provide comprehensive support. Hear firsthand from a clinician and individuals living with ALS about how this holistic approach enhances overall quality of life for patients, their families, and caregivers.

April Szymanski, RN, MSN, ANP-BC, a nurse practitioner with 15 years of experience and a dedicated member of the Lois Insolia ALS Clinic team, will share insights on the importance of integrated care.

“Clinic is the only thing that keeps me grounded with this disease,” says Frank, who is living with ALS. Don’t miss this opportunity to learn more about the pivotal impact of multidisciplinary care in the ALS journey.

Help Make a Difference — Volunteer with Us!

Join the fight against ALS by volunteering with the Les Turner ALS Foundation! Whether you’re interested in participating in our signature ALS Walk for Life, supporting Team Race for ALS at a running event, organizing a Fundraise Your Way event in your community, or engaging with our Young ProfessionALS Group, we have a place for you. We even offer remote volunteering through our Gratitude Group.

No special skills are required—just a willingness to make a difference. With various opportunities available throughout the year, your effort can significantly impact those affected by ALS. Come be a part of our dedicated community and experience the rewarding feeling of giving back, click for more info.