Faces of ALS
For forty years, we have had the honor of providing hope and help to people with ALS. Through “Faces of ALS,” will tell the stories of people who have been affected by ALS and how the Foundation has helped support them on their journey.
The accomplishments achieved by the Les Turner ALS Foundation in our forty years have been countless. Each success paved the way for another, building a Foundation that today provides support to the vast majority of people living with ALS in the Chicagoland area and serves as a model for other ALS organizations worldwide.
We ask you to join us as we celebrate and honor the people supported by Les’ vision through the years and as we continue our work to ensure that, one day, we will live in a world free of ALS.
It all started with one man – Les Turner. At the age of 36, Les was an accomplished Chicago area businessman, married and raising three young sons. In 1976, he was hit with a fatal blow when he was diagnosed with ALS, a disease he and his network of close friends and family knew little about. Looking around, this tight-knit group found few resources or information on what was known as Lou Gehrig’s disease.
Les and his family were virtually alone in their fight.
But Les didn’t give up. He, along with his wife, Ina, her sister and her husband, Bonny and Harvey Gaffen, and their friends and family, decided to start a foundation that would raise funds to provide vital research and resources to ALS patients and families. No one would have to go through this disease feeling alone and uninformed.
In 1977, the Les Turner ALS Foundation was officially launched.
Only a year later, Les passed away from the disease. But his legacy would go on to support thousands of people living with ALS and their families, growing stronger each year.
Forty years later, we still fight Les’ battle and continue his vision of ensuring all ALS patients and families have the resources, support and hope for a cure that were unavailable to him. We do this while continuing to fund world-class ALS research and clinical care.
In honor of our 40th anniversary, Les’ family has written a letter of thanks to the supporters who enabled the Foundation to grow into what it is today, the oldest comprehensive ALS group in the country.
15 years ago, when Ken Hoffman’s mother, Harriet, was diagnosed with ALS, he knew little about the disease. Very quickly, Ken and his family began looking for answers. It was through that search he was introduced to the Les Turner ALS Foundation.
He turned to an old fraternity brother, Dr. Scott Heller, a neurologist at the Lois Insolia ALS Clinic, the patient care side of the Les Turner ALS Research and Patient Center at Northwestern Medicine.
With one phone call from Dr. Heller, Ken and his family immediately started receiving care at the clinic and support from the Foundation
“What stands out most to me as I reflect back on that tumultuous time is the passion, commitment and care my mother and father received from the Foundation throughout their entire journey with ALS.”
After Harriet passed away, Ken dedicated himself to making sure no family faced ALS alone and, in 2007, joined the Foundation’s Board of Directors. In 2014, with a vision to continue moving the Les Turner ALS Foundation closer to a cure, Ken took on the role of President of the Board.
Ken’s leadership of the Foundation is not only a direct result of having watched his mother live with the disease and seeing the incredible care she received along the way, but also experiencing that support for himself and the rest of his family.
“Everyone from the home and community services team and the office staff to the clinicians and researchers and my colleagues on the Board of Directors worked together to ensure my family had the best advice and that my mother had the greatest quality of life as the disease progressed. From day one, I understood that the number one priority of the Les Turner ALS Foundation is, and always will be, the patient.”
Born in Punjab, India, Umesh moved to the U.S with her husband, Sushil, and their two children in 2000. Employed as a caregiver at an assisted living facility, Umesh never suspected that her livelihood would become a crucial need of her own. After noticing weakness in her legs, she began to limp on the job. Umesh’s doctors shocked her family when they concluded that she had ALS. Initially distraught and depressed, Umesh feared for her future.
Soon after her diagnosis, the Sainis found the Lois Insolia ALS Clinic at the Les Turner ALS Research and Patient Center at Northwestern Medicine where Umesh learned about the unique programs and patient services the Les Turner ALS Foundation had to offer. In early 2012, she began receiving home visits from the Foundation’s Patient and Family Advocates. Through the culmination of support from the Foundation, care at the Clinic and love from her family, Umesh eventually accepted her diagnosis and vowed to live life boldly.
While she strived to maintain hope, the disease presented countless challenges for Umesh and her family, including financial restraints. Paying for necessary equipment, transportation to Clinic and constant caretaking, ALS proved to be an extremely costly disease to manage. The Saini family turned to the Foundation’s grant programs for relief. “The beauty of the Foundation’s various grant programs is that they cater to Umesh’s changing needs throughout the progression of her disease,” says Sushil. The Saini’s started using the Stuart Rosen Transportation Grant to help Umesh get to clinic and later utilized the Walter Boughton Patient and Family Services Grant to help her obtain a much needed power wheelchair.
Now, they turn to the Dan Nelson Respite Grant, which helps offset the cost of hiring a caregiver. Though Umesh’s family have been the primary caretakers since the beginning stages of her diagnosis, her progressing condition prompted them to hire additional assistance. With the grant, Umesh is now receiving care when her family is unavailable.“The Dan Nelson Respite Grant has allowed my husband and children to tend to everyday tasks without worrying about my safety. It not only helped me, it helped my entire family.”
Umesh attributes her quality of life to the network of support she receives from her family, the Clinic, the Foundation and most importantly, her mindset. “If I could offer advice to anybody living with ALS: be open to help and advice, and no matter what, never lose hope.”
In 2013, Josh was a recent graduate from the University of Notre Dame with much more on his mind than job hunting. His 29-year-old brother, Eric, was recently diagnosed with ALS. The news was shocking–Josh never imagined that his beloved older brother would have a terminal disease or that he would need to care for him at such a young age. Immediately, the von Schaumburgs became proactive in finding support for Eric and the entire family.
When Eric started receiving care from the Lois Insolia ALS Clinic at the Les Turner ALS Research and Patient Center at Northwestern Medicine, Josh was introduced to the ultimate support group: The Les Turner ALS Foundation’s Young ProfessionALS Group (YPG). Through the organization, Josh was able to meet other young Chicagoland working professionals with one common goal: finding a cure for ALS.
From casino nights to pub crawls, to monthly meetings at restaurants or members’ homes, YPG has provided Josh the opportunity to engage in a vital community that benefits those living with ALS and their loved ones. Though Josh has made many friends and lasting memories through YPG, the group is far more than a social network. YPG serves as both an outlet of joy to fortify Josh’s motivation in finding a cure, and an outlet of strength assisting his ability to provide the care and support Eric deserves. “While the YPG events are always a blast, giving back to the Foundation that has provided such necessary support to my family, is an honor.”
The positivity and sense of hope created by YPG helps members like Josh transcend the pain of coping with a loved one living with ALS, and enables him to channel his energy into planning, discussing and creating ways to raise funds and awareness for those bravely battling the disease, like Eric.
Josh’s favorite YPG memory dates back to 2014 at his first NCAA Bracket Challenge Kickoff Party. The number of participants far surpassed his expectations and the amount of support he felt that night made Josh realize how instrumental YPG is in the lives of young people impacted by ALS. From watching basketball with new friends to catching up with old buddies, the YPG event not only raised crucial funds for ALS research and patient care, it was also a reminder that nobody is going through the fight alone.
Although the effects of ALS are devastating, the support and camaraderie of YPG ensures that there is always hope. Today, hope fuels Josh as he cares for Eric throughout his courageous journey. “From the multidisciplinary clinic for my brother, the social work support for my family and the influence of YPG on my life, the Les Turner ALS Foundation continues to make this unthinkable hardship easier for us all.”