July 2023 Foundation eNews

Ashley RosenbrockFoundation eNews, Home Page

 Future ALS Walk for Life Captains in the Making

Our ALS Walk for Life team captains play a vital role in the event’s success. They tirelessly recruit teammates and raise funds through various channels, including emails, phone calls, and social media.

In 2019, we had the privilege of having Aubrey Launer, a high school junior, as one of our youngest team captains. Leading Paul Launer’s Iron Horse Brigade, Aubrey carried on her father’s legacy of making a difference in the ALS community. Despite her young age, Aubrey organized restaurant fundraisers, leveraged social media platforms, and sought support from local businesses, resulting in an impressive fundraising total of over $7,000.Her dedication highlighted the importance of community involvement, showcasing the strength that comes from standing together as a team.

It’s time to put your own fundraising skills to the test for this year’s Walk for Life on Saturday, Sept. 23. Our team is ready to help!

The Importance of Comprehensive Care for ALS

Rankin Family

Kristin Rankin is a former assistant professor and mother of three who was diagnosed with ALS at the age of 38. Despite the physical challenges she faces, Kristin continues to contribute to research projects and mentor PhD students with the support of her colleagues and access to technology.

Through the Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine, Kristin receives comprehensive clinical care and access to clinical trials. The care team includes neurologists, pulmonologists, dieticians, speech pathologists, and occupational therapists, all ensuring Kristin’s needs are met and that she remains an active participant in her care.

“The whole care team makes me feel like I’m an equal partner in my care, which means a lot to me and can be rare to find in the healthcare setting,” Kristin says. With their support, she finds strength and cherishes the small joys in life, embracing each moment with her family.


Fundraise Your Way: Online or In-Person

volunteers with yellow vests strike out

Fundraise Your Way is a community-based program that empowers you to raise funds for the Foundation. Whether you’re commemorating a birthday or organizing a golf outing, you can turn your special occasions, hobbies, or athletic pursuits into opportunities to support individuals living with ALS.
Use Fundraise your Way as a another means of raising funds for your Walk for Life Team! You can create an online individual or team fundraiser, utilizing our user-friendly platform and sharing it with loved ones.

Alternatively, showcase your planning skills by organizing your dream event with our staff helping set you up for success. If time is a constraint, simply join one of our pre-existing events and contribute to their fundraising efforts. Get involved and make a difference!


Air Travel Gets More Accessible

air travel

We’re collaborating with the Muscular Dystrophy Association to make air travel more accessible for people with disabilities. The House Transportation and Infrastructure Committee unanimously passed legislation to reauthorize the Federal Aviation Act, which is crucial for implementing long-awaited improvements.

The bill includes provisions such as regular training for airline personnel assisting passengers with disabilities, ensuring accessible boarding processes, and updating standards for addressing complaints and wheelchair-related issues.

This bill represents the most significant advancements in accessible air travel since the Air Carrier Access Act of 40 years ago. While the Senate bill is pending, further negotiations are required. For more details on this transformative legislation, click the link.


ALS & Activities of Daily Living

Daily Living Guide Graphic

While every person’s experience with ALS is unique, our goal is to provide a wealth of knowledge to support you both now and in the future. Although not all things highlighted in this guide may be necessary, we’ve curated this information to assist you in navigating the changes associated with this disease.

In this guide, you’ll find helpful details about devices designed to aid you in various daily activities like eating, drinking, dressing, bathing, oral hygiene, and sleep, to name a few. Also included are practical tips to make your everyday life more manageable and comfortable. Check out the guide at the link below!