November 2023 Foundation eNews

Ashley RosenbrockFoundation eNews, Home Page

ALS Better Care Act Makes Its Way to the Senate

Exciting news from Capitol Hill: the ALS Better Care Act has been introduced in the U.S. Senate, a crucial step towards improving access to multidisciplinary care for those battling ALS. We worked with the offices of Sen. Chris Coons and Sen. Lisa Murkowski to advocate for the bill, which joins the version recently introduced in the U.S. House of Representatives.

The ALS Better Care Act aims to establish a supplemental, facility-based payment in Medicare for ALS-related services, ensuring comprehensive care for the 30,000 Americans affected by this debilitating disease. By extending coverage for critical healthcare services provided at multidisciplinary clinics, the legislation promises to enhance the quality of life for patients and their families.

We’re thrilled to support this legislation, recognizing its potential to strengthen and expand clinics, providing equitable access to quality care. Read the press release and full text of the bill at the link below:

Join Us for the Annual Celebration of Life

Join us this weekend for the poignant Celebration of Life event, honoring those lost to ALS. Led by Anne Lidsky, PhD, this annual tribute promises a heartfelt experience.
Event Details:
Date: Saturday, Nov. 18
Time: 11:00 AM – 11:30 AM
Location: Online via Facebook Watch (Recording available for later viewing)
During the memorial, we’ll showcase photos of loved ones who departed in the last year, complemented by the beautiful melodies of Cantor Adam Kahan.

Everyone Hit the Jackpot at All in For ALS Casino Night

We’re overjoyed to express our deepest gratitude to each one of you for making the “All in for ALS Casino Night” an astounding success! Thanks to your incredible support and the terrific crew from our Young ProfessionALS Group (YPG), we raised over $60,000 and brought over 250 people together for a night of camaraderie, games, and generosity.

The atmosphere was electric with excitement as guests tried their luck at blackjack, roulette, and craps, bid on fantastic auction items, enjoyed delicious appetizers, and created lasting memories in our photo opportunity.

It was inspiring to see attendees, many of whom have experienced the impact of ALS firsthand, rallying together to support the Les Turner ALS Foundation and having a great time while doing it. Check out the photos and then reach out to the YPG to get involved in their next event.

Guide Spotlight: ALS + Genetics

Genetic testing can be a valuable tool for people living with ALS, but it is important to understand the pros and cons before making a decision. Our ALS + Genetics guide provides clear and concise information about genetic testing for ALS, including:
  • What it is and how it works
  • How much it costs
  • What the benefits and risks are
  • How to decide if genetic testing is right for you
The guide also includes resources for finding a genetic counselor and getting genetic testing.

Introducing Chris Terry’s All-Stars

Chris Terry, Forward for the Chicago Wolves hockey team, has created a special program just for the Les Turner ALS Foundation community called Chris’ All Stars.

If you and your family would like to attend a game as Chris’ guest and enjoy a post-game meet & greet, please click on this link to learn more and submit your nomination. Once received, a representative from the Chicago Wolves will be in contact with you to make your special arrangements. Note that this program is limited to people living with ALS and their families.

Learn more about this program at the link below: