July 2023 Foundation eNews

Ashley RosenbrockFoundation eNews, Home Page

Team Run for Her Life is Suiting up for the ALS Walk for Life

Join Julianne Oliver and her team, “Run for Her Life,” in their second ALS Walk for Life. Her mother, Leslie Bartosz, was diagnosed with ALS during the pandemic. “For a disease that’s already so isolating, this made for an additional level of difficulty,” said Julianne. The Foundation provided vital support for them, including access to a clinical trial that Leslie took part in at the Lois Insolia ALS Clinic at Northwestern.

Julianne emphasizes the importance of community and awareness, saying, “My favorite part is seeing the community and knowing how much support there is…knowing we can have that kind of impact.” The ALS Walk for Life not only involves walking but fun activities and spending quality time together. She recalls a memorable moment from a previous walk where folks broke out in a spontaneous dance.

As the “Run for Her Life” team continues to raise awareness, Julianne’s words echo their mission: “Helping others know that they’re not alone.” Join them in the walk, supporting ALS research, showing solidarity for those affected by the disease, and working toward a world free of ALS.

Welcome to the Team Michelle Shaker, LCSW

We’re thrilled to announce the newest addition to our team at the Les Turner ALS Foundation: Michelle Shaker, LCSW. As a dedicated social worker with a strong background in medical care, Michelle brings a wealth of experience and a passion for providing comprehensive support to individuals and families facing neurodegenerative diseases.

Michelle’s career includes work at Northwestern Memorial Hospital, where she served in the neuromuscular division. There, she provided crucial case management, led counseling groups, and offered one-on-one psychotherapy to people living with neuromuscular diseases, including ALS. Her commitment to holistic care and her understanding of the emotional and logistical challenges faced by families make her an invaluable asset to our ALS community.

As a member of our Support Services Team, Michelle will contribute her expertise in coordinating ALS care and providing compassionate guidance. We are thrilled to have Michelle join us to support people and families affected by this disease.


 ALS Learning Series: Supporting Those Caring, Dying, and Grieving

In this Learning Series webinar, Professor Samar Aoun will share key findings and advice on enabling social networks to support people living with ALS/MND, making palliative care more widely accessible. A particular focus will be on bereavement support and family caregiver support.

Professor Aoun is renowned for her expertise in public health palliative care and compassionate communities research, currently serving as Chair of MND Australia, MND Association of Western Australia, and working as the Perron Institute Research Chair in Palliative Care at The University of Western Australia.

Don’t miss this opportunity to gain valuable insights. Register now for the webinar and join us in advancing support and care for the ALS community.

Three Cheers for the YPG Bar Crawl!

We want to express our heartfelt gratitude to all who came out for the annual All in For ALS Bar Crawl Fundraiser last weekend! Your support and participation mean the world to us.

The Young ProfessionALS Group (YPG) gathers on the second Thursday of each month, creating a vibrant community that aims to socialize, offer support, and explore new avenues to raise awareness and assist those affected by ALS.

Throughout the year, YPG organizes an array of fundraisers, including the popular NCAA bracket challenge and Casino Night, slated for Saturday, Nov. 4. These events not only generate funds but also spread awareness about ALS and its impact on individuals and families.

Moreover, YPG members go above and beyond by actively supporting the Les Turner ALS Foundation. They form teams and participate in events like the ALS Walk For Life, join Team Race for ALS, and volunteer their time and efforts throughout the year.

Click the link below to get involved with YPG and make a difference in the lives of those touched by ALS.

 ALS & Relationships, Sex, & Intimacy
Navigating relationships and maintaining intimacy while living with ALS can be challenging. That’s why we created our comprehensive ALS Relationships, Sex, and Intimacy Guide, a valuable resource for individuals and caregivers.

This guide addresses the changing dynamics that may occur when you become a caregiver, providing tips to navigate these shifts in your relationship. It also sheds light on the potential changes in thinking and behavior associated with ALS, helping you understand and adapt to these challenges.

Creating fulfilling connections is still possible, and the guide offers advice on living in the present, taking things one day at a time, and focusing on positive memories. Moreover, it acknowledges the importance of sexual intimacy, providing tips for couples to maintain a fulfilling connection, including open communication, trying new things, and utilizing accessible aids and toys.

Access the ALS Relationships, Sex, and Intimacy Guide by visiting our website below. We hope this guide empowers you to navigate these important aspects of your journey with confidence and understanding.