January 2023 Foundation eNews

Ashley RosenbrockFoundation eNews, Home Page

Foundation News

Mature ‘lab grown’ neurons hold promise for ALS and other neurodegenerative diseases

Researchers at the Les Turner ALS Center at Northwestern Medicine and Northwestern University have created the first highly mature neurons from human induced pluripotent stem cells (iPSCs), which could lead to new opportunities for medical research and potential transplantation therapies for neurodegenerative diseases like ALS and traumatic injuries.

“For the first time, we have been able to see adult-onset neurological protein aggregation in the stem cell-derived ALS patient motor neurons. This represents a breakthrough for us,” said Evangelos Kiskinis PhD, an assistant professor of neurology and neuroscience at Northwestern University Feinberg School of Medicine and a faculty member of the Les Turner ALS Center at Northwestern Medicine.

With the hope of replacing damaged or lost neurons for spinal cord injuries as well as neurodegenerative diseases, and potentially restoring lost cognition or sensations, researchers are looking at the possibility of transplanting healthy neurons into a patient.

Celebrating the spirit of caring

How do you recognize someone who truly cares? They keep showing up. And that’s why we’re proud to present First Bank Chicago with the Hope Through Caring Award.

Over two decades, First Bank Chicago has provided much-needed funding for our grant programs that help people living with ALS and caregivers modify their homes, get to and from the clinic, enjoy respite care, and much more. But that funding is only one part of the commitment they’ve made – employees keep returning to personally volunteer their time at Foundation events, year after year, part of a bank-wide culture of caring.

The people of First Bank Chicago recognize that ALS may be a ‘rare’ disease, but its effects are not.

“I brought my daughters to the ALS Walk for Life in 2012 after their principal passed away from ALS,” says Denise Bryant, vice president of marketing and community outreach at First Bank Chicago. “They saw firsthand the power of hope and it provided them some comfort and understanding while grieving the loss of someone they admired.”

Join people who share your commitment to ALS care and research at the Hope Through Caring Gala on Saturday, Feb. 18. Registration closes next week, so don’t delay – purchase your tickets and come out to celebrate and honor the ALS community!


Final NIH/NINDS ALS Strategic Plan to be presented on Feb. 1

The National Institute of Neurological Disorders and Stroke (NINDS) is finalizing its strategic planning process to identify 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 strategic plan’s working groups, which included the Foundation’s CEO, Andrea Pauls Backman, presented their findings at a workshop in October. The strategic planning committee then reviewed and incorporated many thoughtful comments received from advocates into the final plan.

Register now for a presentation on the final strategic plan from 2:15 – 3: 30 p.m. CT on Feb.1 at the National Advisory Neurological Disorders and Stroke Council (NANDSC) Meeting.


Someone you should know

One of Karen Steffens’ favorite parts of her role as an ALS support services coordinator is solving problems for people living with ALS.

“Those living with ALS are dealt a lot of ‘stuff’ they need to contend with. If I can help eliminate some of the roadblocks along the way, I’m happy to do so,” says Karen. “I may not always be able to provide a completely smooth road but even if I can turn some of those roadblocks into simply speed bumps, I’ll get a great sense of satisfaction knowing that I’ve relieved some of their burden.”

A recent support group meeting offered an example of what she cherishes about the ALS community.

“A member was asked, ‘If you could be any kind of tree, what tree would you be and why?’ She answered, ‘A decorated Christmas tree so that I can bring joy to all those around me.’ ALS does not have to break your spirit! ALS tells something about you, but it does not define who you are or what you can do!” says Karen.

Learn more about our support services team here 

ALS & Children

Children are impacted by ALS in many ways. They can sense when you are stressed and may even believe that they are to blame. When a family member is living with ALS, children in the family are at higher risk for psychosocial distress.

Our ALS & Children guide contains information on how to talk with your children about ALS, how young people experience caregiving, and how to support them – as well as how to increase your child’s confidence in providing care.