August 2022 Foundation eNews

Emily Cerbone Foundation eNews, Home Page

 

Foundation News

We’re in it Together at the ALS Walk for Life!

The ALS Walk for Life, which will take place on Saturday, September 24 at Soldier Field, brings together thousands of walkers to create ALS awareness and raise much-needed funds for ALS care and research. But it also creates something else that’s valuable: community.

Many teams return year after year, while for others, it is their first time participating in the Walk, like Dave’s Fight Club led by Team Captain Ken. Ken and his husband Dave, who is living with ALS, look forward to the support of the ALS community.

( l to r) Dave and Ken

“My husband Dave was diagnosed with Bulbar Onset ALS this past June,” says Ken. “This year has been very difficult. We felt alone. There were no answers and no comprehension of what we are facing. The Les Turner ALS Foundation has been wonderful to us. When we reached out and asked for help, Les Turner’s compassionate ALS support services coordinators were the first to immediately give us vital information and let us know that we are not alone.”

Having been together for 30 years, Dave and Ken are especially excited about this Walk since it will bring together their two families for the first time as a united front to support not only Dave, but others impacted by ALS.

“Dave’s Fight Club is all about support and love. We want to let others know that we are not alone,” says Ken. “We believe strongly in contributing to the ALS cause, supporting the ALS community, and creating more ALS awareness. Additionally, we walk to show our appreciation of the Foundation and for what they have done and will continue to do for us.”

Why should others put together a team and participate in the ALS Walk for Life?

“Before Dave’s ALS diagnosis, we never knew how many people are affected by ALS,” says Ken. “As we started to talk openly about Dave’s diagnosis, so many people mentioned that they knew someone who was lost to ALS.” He adds, “We want people to know that the Les Turner ALS Foundation offers help and support for those who are affected by ALS, along with their friends and families. And this walk is just a small way of giving back and saying, ‘thank you’ for all that you do.”

Register or donate now for the ALS Walk for Life so that others like Dave and Ken can receive the support and services that they need in fighting ALS.

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Join our 12th Annual Les Turner Symposium on ALS on November 7

Experts in ALS care, treatment and research from across the country will gather at the 12th annual Les Turner Symposium on ALS – and you’re invited.

This year’s symposium will be held on Monday, November 7 from 8:00 a.m. – 4:00 p.m. (CT). There is no charge for admission, either in-person or via livestream.

“We all want to see an end to ALS. The Les Turner Symposium on ALS paves the path for a better future by bringing together patients, scientists, clinicians, and caregivers united in these efforts,” says Hande Ozdinler, PhD, an assistant professor of neurology and member of the Les Turner ALS Center at Northwestern Medicine, which is hosting the event.

Nicholas Maragakis, MD

The day-long symposium will feature presentations from leading ALS researchers and clinicians and people living with ALS in the morning, and a clinical conversations panel in the afternoon. Attendees will have the opportunity to hear from people who are striving to uncover new and more effective treatments for this devastating disease, and ask questions about their work. That includes a keynote presentation by Nicholas Maragakis, MD, Medical Director of the Johns Hopkins ALS Clinical Trials Unit and Director of the ALS Center for Cell Therapy and Regeneration Research at Johns Hopkins.

Register

 

 

 

Foundation CEO named to NIH ALS Strategic Plan Working Group

Andrea Pauls Backman, the Foundation’s CEO, has been invited by the U.S. National Institute of Neurological Disorders and Stroke (NINDS) to serve as a working group member on its ALS Strategic Planning Team and help guide the direction of ALS research nationwide.

“I’m grateful for the opportunity to bring our community’s needs, concerns, and insights to this important work,” said Pauls Backman. “At the Les Turner ALS Foundation, people living with ALS and their families are at the center of everything we do. During this strategic planning process, we can set a course for research that recognizes their expectations and priorities.”

With the new ALS Strategic Plan, NINDS – which is part of the National Institutes of Health (NIH) – is engaging people living with ALS, caregivers, advocates, clinicians, and the broader ALS community to identify the most important knowledge gaps and research opportunities that will lead to the discovery of effective interventions for diagnosis, treatment, management, prevention, and cures for ALS.

Pauls Backman and fellow working group members will present their findings on October 26-27, 2022 at a virtual meeting that will be open to the public. The research priorities will be posted online for public comment before they are presented to the NINDS for approval. Know that your voices are at the table in the development of this important ALS strategic plan!

Donor Spotlight: Robert P. Ives 

(l to r) Mary and Bob Ives

Robert “Bob” P. Ives is a familiar face at the Foundation. He has presented at our ALS Learning Series webinars, provided feedback on the My ALS Decision Tool™, and participates in our support groups. Bob and his wife Mary are true advocates for the ALS community and have provided generous funding towards our support services and ALS research.

Bob is a veteran who served as a lieutenant in the Army during the building of the Berlin Wall and the Cuban Missile Crisis. Following his time with the military, he worked as an engineer and owned his own business.

“I have always prioritized ‘giving back’ as my financial and time resources permit. I prefer to support entities that are close to my family, like the Les Turner ALS Foundation. What I especially like about the Foundation is that their services are available to anyone in the Chicago area, and they fund significant research programs.”

In 2021, Bob was presented with the Hope Through Caring Award at the Foundation’s Hope Through Caring Gala. This award honors those whose commitment to the fight against ALS has helped raise funds for research, provide services for patients and families and increase public awareness. He understands the importance of the Foundation’s services from his own experience with them.

“After emotionally recovering from my ALS diagnosis, I sought help in dealing with the devastating ALS prognosis. I attended one of the Foundation’s support group meetings. There, I met now retired support services coordinator Ileane Mindel, RN, who introduced me to the array of support services available through the Foundation.”

We are grateful to Bob and Mary for helping to fund research and our support services which provide education, resources, and care to people living with ALS and their families.

Please consider making a gift so that others, like Bob and his family, receive the support they need in their fight against ALS.

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