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.”
“We walk for those who cannot stand, we raise funds for those who cannot move and we spread awareness for those who cannot speak,” Cindy reflects on over 20 years of experience as captain of the Lincoln Park Tag Days drive. During the month of May each year, Cindy and her group of volunteers put on yellow vests, grab donation jugs and take to the streets to raise crucial funds and awareness about ALS. In honor of her mother who passed away from ALS, Cindy uses Tag Days to educate others about the disease and ensure that nobody feels alone in their fight.
When Cindy’s mother was diagnosed with ALS in 1992, the future was uncertain. To get informed, Cindy visited the Northwestern Medicine library to read about the effects of ALS. She was horrified to learn that there was no known cure or treatment and frantically began looking for options. Her search led to the Lois Insolia ALS Clinic at the Les Turner ALS Research and Patient Center at Northwestern Medicine where her mother promptly began receiving care.
Inspired by her mother’s resilience, the innovation of the researchers and the care from the clinicians, Cindy wanted to take action for the ALS community, and started a Tag Days drive in her neighborhood. Although the mechanics of the event involve the grassroots task of raising pocket-change from passersby, the true purpose of Tag Days for Cindy is to inform others about the devastating impacts that ALS had on her mother and their family, as well as the support the Les Turner ALS Foundation provided them. Through Tag Days, Cindy realized the value of her voice and uses it to motivate others that their voices, too, can make a difference in the lives of those living with ALS. “Tag Days is first and foremost a tool to spread awareness, the fundraising component is just an extra result.”
The tremendous growth of the Lincoln Park Tag Days Drive over 20 years can be attributed to Cindy’s commitment to spreading the word. In 2016, the Drive raised nearly $6,000, grew to a group of 50 volunteers and inspired the new online Cyber Drive option. The more people educated about ALS, the easier it is to cultivate support for advancements in research and patient care for those like Cindy’s mother.
Although her mother passed away after courageously battling ALS, Cindy continues to honor her through supporting the Foundation and intends to carry the tradition as long as she can. “My family and I will participate in Tag Days for as long as it takes–we want to be here when the Foundation closes their doors, turns off their lights and announces, ‘we found a cure.’”
Patti always prioritized leading a healthy lifestyle. As a passionate marathon runner, nurse practitioner for the Navy and mother of two athletic sons, Patti thrived in her fast paced life. But now, every single step is a challenge. Diagnosed with ALS in November of 2016, Patti was forced to cope with the symptoms of the disease, including the slow loss of mobility and strength in her legs. Although daily tasks are now more challenging, Patti refuses to let the disease damper her ambitions or prevent her from embracing her busy, colorful and active life. Encouragement from her family, fellow members of the Libertyville Running Club and the Les Turner ALS Foundation reminds her how much she can still do.
As soon as Patti started receiving care from the Lois Insolia ALS Clinic at the Les Turner ALS Research and Patient Center at Northwestern Medicine in 2016, she was amazed by the various support options. From expert clinical care, to educational seminars and the Foundation’s Patient & Family Advocates, Patti knew all aspects of her life were enriched. “The Foundation provided so many modes of support; from physical help, to informational discussions, and most importantly, social interactions with those that understood my struggle.”
Patti was most intrigued by the countless ways she could contribute to the ALS community through the Foundation. Being a runner, the Foundation’s Strike Out ALS 5k and 1 Mile Run, Walk & Roll particularly sparked her interest. By recruiting her family, friends and Libertyville Running Club teammates, she aims to inspire others to take action, “I believe that all people, even those without a personal connection to ALS, should run or walk in the Strike Out 5k for one simple reason: because they can.”
Even the diminishing strength of her legs will not stop Patti from crossing a finish line. In May of 2017, Patti competed in a Wisconsin Marathon—her ten year old son running with her, eventually pushing her in a transport chair for the final mile. This experience was pivotal in fortifying her will to participate in races, like the Strike Out 5k, with her loved ones alongside her.
Patti realizes the importance of appreciating the seemingly small beauties in life, “Any runner has the amazing ability to do what others, like me, can no longer do.” By continuing her passion at events like the Strike Out ALS 5k, Patti hopes to motivate others affected by ALS to persevere on the track and in their daily lives. “At the end of the day, I realize that I have a lot to live for.”