December 2022 Foundation eNews

Ashley RosenbrockFoundation eNews, Home Page

Foundation News

 Giving back in gratitude

For people who have lost a loved one to ALS, the holidays are a time of reflection and gratitude to those who cared for family and friends during their ALS journey. Victor was 14 years old when his father, an avid marathon runner, was diagnosed with ALS. Many years later, he has not forgotten the support his family received from the Les Turner ALS Foundation.

“Anyone who is caring for someone diagnosed with ALS knows the struggles that arise from it,” says Victor. “My family was fortunate to have love and support throughout our father’s battle.”

Read more about Victor’s story – and please give a gift today so people living with ALS and their families receive the critically important resources they need to continue their fight against this disease and have hope through scientific research at our Les Turner ALS Center at Northwestern Medicine.

 Save the date to honor amazing ALS advocates and community partners

Join us to celebrate the ALS community at our 35th annual Hope Through Caring Gala on Saturday, Feb. 18, 2023 at the Radisson Blu Aqua Hotel in Chicago to honor those who have made a significant impact toward a world free of ALS.

The Hope Through Caring Award will be presented to First Bank Chicago in recognition of their many years of corporate sponsorship support of the foundation’s signature events and need-based grant programs for people living with ALS and their families.

The Harvey and Bonny Gaffen Advancements in ALS Award will be presented to Brian Wallach and Sandra Abrevaya, two of the most innovative and impactful advocates in the ALS community today.

Join us on this special night to gather with the ALS community and honor these individuals for their transformational efforts.

 Make your voice heard: comment on the new NIH/NINDS ALS Strategic Plan by December 16

On Oct. 26-27, the National Institute of Neurological Disorders and Stroke (NINDS) hosted a virtual ALS Strategic Planning Workshop addressing questions and comments on the current draft of the ALS Strategic Plan. With feedback from the community, this plan identifies the highest priorities for research that will lead to the discovery of effective interventions for the diagnosis, treatment, management, prevention, or cure of ALS.

“The NIH/NINDS ALS Strategic Plan is the first time people living with ALS, caregivers, researchers, clinicians, and advocates have joined forces with the power of the NIH to change the trajectory of ALS research and care,” says Foundation CEO Andrea Pauls Backman. “I am honored to have worked with leading members of the community to help draft this plan.”

We urge you to comment on this revised plan identifying the priorities across the five key areas articulated in the plan, including potential benefits, drawbacks or challenges, other priority areas for consideration, or any other comments.

With your input, the final plan will be presented for review at the National Advisory Neurological Disorders and Stroke Council (NANDSC) Meeting on Feb. 1-2, 2023. Please submit your comments via the online form by Dec. 16!

 Young ProfessionALS Group (YPG) makes a difference at annual Casino Night

The Foundation’s Young ProfessionALS Group (YPG) hosted their annual All in for ALS Casino Night on Saturday, November 12. The event brought together over 160 people and raised over $33,000. Photos from the event can be found here. Each year, YPG presents a deserving volunteer with the Matthew Rupsis Inspiration Award for their dedication to the Foundation. Matt Rupsis was an ALS advocate and founding friend of All in for ALS Casino Night, who passed away in 2012. This year the award went to Kara Tichawa.

“Kara has actively participated in our monthly meetings, even virtually during the heart of the pandemic. She has solicited many prizes and sponsorships for both our casino night and summer fundraising events while bringing a big group of friends and family along with her.” says YPG co-chair Laura Kunberger.

The YPG is a great way to meet other Chicagoland young professionals with a common interest in finding a cure for ALS. This dedicated group also hosts an annual bar event and an NCAA March Madness bracket tournament – having fun while doing good. New members are always welcome to join – learn more information on our website.

Home modifications made possible with Walter Boughton Grant

As a licensed cosmetologist and hairdresser for 19 years, Janie Gobeli was concerned when she began to lose strength and dexterity in her right hand. Walking was already difficult for her, having recently broken her kneecap in a fall. Bad luck turned worse when Janie was diagnosed with ALS in December 2021. Janie applied for the Walter Boughton Grant Program to help with the cost of an elevator lift for her power wheelchair. In August, her application was approved, and construction on her home began.

The Walter Boughton Grant Program offers financial awards to help defray the cost of equipment, home modifications and other items for people living with ALS. It is named after Walter Boughton, who lost his battle with ALS in 1993.

“I am grateful for the Boughton Grant Program because it allows me to enter my home using the wheelchair lift,” says Janie. “The lift allows me to get in and out of my home using either my walker or wheelchairs. It has given me independence.”

The Walter Boughton Grant Program has made a big difference for Janie and other people living with ALS, and your donations can do the same. Please consider donating to help more people like Janie get the support they need to make living with ALS a little easier.