ALS United Greater Chicago’s journey began with a mission to support individuals and families impacted by ALS. Over the past two decades, the organization has grown from humble beginnings to become a vital resource for care, advocacy, and community. This retrospective highlights some of the milestones, stories, and unwavering commitment that have defined the organization’s first 20 years.
2004: A Vision Takes Shape
Martha Kucharski founded ALS United Greater Chicago in 2004 to honor her husband, Edmund Kucharski, a former Chicago public servant who passed away from ALS in 1994.
What began as a conversation at a kitchen table grew into a beacon of hope for those living with ALS and families across the region. Their goal was simple yet profound: to ensure that no family facing ALS would ever feel alone.
“We wanted to create something that would not just honor my father’s memory but make a tangible difference in the lives of others. When he was diagnosed, the only thing he was told was to ‘get his affairs in order.’ We wanted more for those diagnosed with ALS.” – Toby Kucharski
This foundational year marked the start of a journey that would transform lives, offering care, education, and advocacy for individuals living with ALS in our region.
Tragically, Martha Kucharski passed away just a year after founding the organization. Yet, her legacy lived on as her son, Toby, championed the cause, serving on the board and advocating for the ALS community locally and nationwide.
“Martha’s vision set the course, and it was up to all of us to make it happen. Her drive and determination in that first year continue to inspire everything we
do today.”
2006–2010: Building Momentum
2006: Julie M. Sharpe joins the team. Under her guidance, ALS United began to expand its reach and services, laying a strong foundation for its future.
“A clearly defined purpose is one of the most important foundations of any organization. Reflecting on my tenure, I’m proud of the incredible team that works tirelessly to execute our mission and build a community that ensures no one faces ALS alone.” – Julie M. Sharpe
“When we were recently formed, we decided to generate awareness of our services and presence in the marketplace by being involved in the Chicago Southside parade. We generated awareness but also learned how much the Yankees were despised. One of our board members had offered to wear Lou Gehrig’s uniform. Well, let’s say there were a lot of boos and vitriol directed at ‘Lou.’ He took it all in stride, and his ‘line’ was ‘Lou, not boo’ … we could not wait for the parade route to end.” – Julie M. Sharpe
2010: Joumana Fawaz-Baroody joined ALS United Greater Chicago’s Care Services Team. A former clinic nurse, Joumana brought a deep understanding of the needs of those living with ALS.
“My journey with ALS United began over 15 years ago while working at the University of Chicago ALS clinic, where I had the privilege of meeting so many extraordinary individuals—patients, families, and caregivers. Their resilience inspired me deeply and opened my eyes to the gaps in care and support that needed to be addressed. I realized that families needed more than just medical care—they needed a comprehensive support network. Joining ALS United Greater Chicago was a natural progression for me, combining my clinical experience with a mission to improve the quality of life for those facing ALS. This work is not just what I do; it’s who I am and what I’m committed to every day.” – Joumana Fawaz-Baroody
Joumana’s early contributions included organizing the first educational symposium and vendor expo, empowering individuals with ALS and their caregivers.
2011–2015: Strength Through Community
2009: Sarah Brandt, now Director of Development, attended her first ALS Walk at Lincoln Park in Chicago, just six months after her grandfather was diagnosed with ALS.
“I’ll never forget that day. The rain didn’t stop a single person from participating. It was a powerful and emotional experience seeing everyone continue despite the weather—walking for those who couldn’t. That’s when I knew I wanted to be part of this organization and its mission.” – Sarah Brandt
2012: We adopted the sunflower as the official symbol for ALS awareness in honor of Shirley Schmelze. It was revealed during our Cure 90/90 awareness event at Daley Plaza. The original paintings of sunflowers were mixed with portraits of individuals, and their stories made a huge impact and generated much awareness.
Since then, we have witnessed how much the sunflower has resonated with our community, who plant sunflowers and incorporate them in wedding bouquets, designs for walk t-shirts, quilts, clever crafts, clothing, and funerals.
The sunflower really does embody who we are and how we lean on each other, “ever hopeful and ever reaching higher.”
2014: Amazing athletes are coming together to run the Bank of America Chicago Marathon for our ALS community.
“It was a complete privilege to run for my sister-in-law, Densie Bernath in 2014 (in honor) and again in 2022 (in memory).” – Jerry Barker
The Ice Bucket Challenge swept the nation, raising unprecedented awareness and funds for ALS. Kendra Albers, now Vice President of Development, reflected on her participation:
“Back then, I did it for fun. Today, it feels deeply personal. The challenge connected people all over the world to the fight against ALS, and it’s incredible to think how much awareness and funding it generated.”
Looking back, we remember the phone calls, the enthusiasm, and the anticipation of “what’s next? Where are we going today?” There were so many opportunities to raise awareness—families, politicians, business owners, and even the Chicago Air & Water Show.
“One of my most memorable moments was when skydivers were supposed to descend with buckets of ice to douse Jim Cornelison and me. When the weather didn’t cooperate, we ran toward the buckets as they were poured on us from every angle. It didn’t stop, and while it was invigorating, I’ve never been so cold! It was an amazing time when the world was learning about ALS, and the ALS community was the focus, generating incredible awareness.” – Julie M. Sharpe
2015: The organization expanded its services to include caregiver education programs and assistive technology initiatives. Peggy O’Connor, RN, started working for ALS United Greater Chicago in 2015.
“One of the first PALS I met was Kris Grahnke. Even before I had the honor of meeting him I had heard about his spirit and his advocacy efforts.
Diagnosed at the age of 28, Kris was determined to be a force in the fight against ALS while he lived whatever life he had ahead of him to the fullest. His raw honesty, emotion, and faith were an honor to witness, as was the village of support that surrounded him.
Kris documented his journey in a blog that I still share with patients and families.” – Peggy O’Connor
Check it out: gronksgrace.blogspot.com/?m=1
Meanwhile, Ruth’s Rowdies, a Champaign Walk ALS team, exemplified the spirit of resilience and community.
“Ever since my mom Ruth was diagnosed with ALS in 2015, I participated with her with our Ruth’s Rowdies Team in the Champaign Walk. Even though she passed away in 2020, Ruth’s Rowdies continues to honor her and support finding a cure for ALS each year at the Walk.” – Patty Houseworth, Walk ALS Team Captain and Ambassador
Sarah’s journey with the Run ALS program began with a personal challenge that became a way to honor her grandfather and support the ALS community. She shares her first marathon experience:
“The first year I began helping with the run program is the first year I ran a marathon! I realized that if we were asking folks to register to run 26.2 miles and raise funds for ALS, that I should try it, too. When I told my husband my idea about registering, he jumped on board as well. It was such an incredible experience!” – Sarah Brandt
2016–2020: Expanding Services and Advocacy
2018: After the opening ceremony of the Chicago Walk event, two veterans, each affected by ALS, positioned their wheelchairs side by side and began sharing their stories. Despite their different backgrounds, these men found common ground in their shared experiences—both their military service and their ongoing battles with ALS. It was a small yet poignant moment, one that stands out among the countless memories created at walk events that have such a profound impact on so many.
2019: Volunteer participation at events like the BMW Championship at Medinah Country Club showcased the growing visibility of ALS United Greater Chicago.
“A group of us volunteered, including Brian Laesch. Brian’s vibrant spirit and engaging personality were truly remarkable. Brian was diagnosed with ALS shortly after our time together and sadly passed away in 2021.”
“This was the last picture we took of the Southwest Suburbs Support Group meeting before the COVID pandemic. We had taken a picture earlier, but Marva came late and the group was so insistent that we retake it to have Marva in it. This memory stands out for me since it shows the care and fellowship the support group has.” – Gema Ramos, Care Services Coordinator
2020: When the pandemic struck, ALS United Greater Chicago ensured no one facing an ALS diagnosis was left without support. We didn’t shut down any services; instead, we pivoted our programs to continue providing crucial care and connection through virtual support groups, remote consultations, and innovative solutions.
The Mini Walk program gave supporters a way to stay engaged while staying safe, encouraging local walks to raise awareness and funds. This flexible approach helped keep the spirit of the walk alive and the ALS community united.
ALS United Greater Chicago’s efforts were recognized nationally, winning Program of the Year from the Peer-to-Peer Professional Forum.
2021–2023: Moments of Connection
2022: Lou Gehrig Day at Guaranteed Rate Field brought the ALS community together in celebration and solidarity. Kendra Albers reflected on the day:
“Lou Gehrig Day 2022 at Guaranteed Rate Field was a fantastic event for our ALS community! I had my whole ‘crew’ involved: my husband, brother-in-law, and son handled the grilling, while my parents warmly welcomed everyone, and my sister and best friend handed out ALS merchandise.” – Kendra Albers
The funds raised from our events are essential for advancing both care and research in the ALS community. Thanks to events like these, the Ice Bucket Challenge, and more, key discoveries about ALS-connected genes have been made. However, we still urgently need treatments and a cure. Every 90 minutes, someone’s life is changed by an ALS diagnosis, and continued support is vital to driving progress.
“I grew up knowing about the devastating illness of ALS. I was five when my father succumbed to familial ALS after nine months.
I noticed my left foot acting funny about two years ago, and now I have ALS, the gene from my father, c9orf72. After further research into my family, I’m the 6th case of limb onset and there are four cases on another branch of the family, all bulbar.
Since I don’t remember much of my dad, every symptom I have is new. I’m grateful for good doctors and ALS United Greater Chicago that gives so much support.” – Patricia Koopmans
2023: The Team ALS charity run program continues to thrive, with hundreds of athletes taking on the Bank of America Chicago Marathon to honor their ALS heroes and support the greater cause. Claudia Salmeron honored her mother’s memory by running the Chicago Marathon for Team ALS. Her journey was deeply personal:
“Running saved me from grief and brought me closer to this incredible community.
Every step I took was in honor of my mom and for all those impacted by ALS. It was an emotional and healing journey that I’ll never forget.”
ALS United Greater Chicago’s Walk ALS program continues to grow, with hundreds of participants coming together each year to raise awareness and support those impacted by ALS. The sense of community is evident as people from all backgrounds unite for a shared cause.
“My first ever Walk event experience was truly one I will never forget. The whole experience was such a rush. The magnitude of support from pALS, volunteers, caregivers and loved ones is one that you have to be there to experience. It is humbling to witness individuals who are going through such hardship come together and be nothing but absolutely cheerful, encouraging, and high-spirited. I will never forget my first ALS Chicago Walk.” – Betty Magana, Administrative Coordinator
The West Aurora Soccer Team, under the guidance of Coach Joe Sustersic, has been a dedicated ally of ALS United. Their contributions range from volunteering at our Chicago Walk events to supporting
Mini-Walks and organizing awareness games. We are truly grateful for their ongoing efforts and commitment.
2024: Reflecting on 20 Years and Looking Ahead
The 20th year of ALS United Greater Chicago has been marked by reflection and renewed commitment. ALS United Greater Chicago was a proud sponsor of the inaugural “End the Legacy” event in June 2024, hosted by the Les Turner ALS Foundation. It highlighted the power of community involvement in driving social change and fostering collaboration among patients, caregivers, researchers,
and advocates.
“Many team members have children, spouses, parents, sisters, and brothers who have come alongside us to serve the ALS Community. My daughters have supported me over the years. My grandson, now eight, has accompanied me to events.
Most recently, when the Northern IL support group gathered, Michelle challenged Avery to a race against her power wheelchair. We are fortunate to be surrounded and included in the lives of those we serve. It brings us joy to have our children witness the courage and positivity of those living with and fighting to end ALS.” – Julie M. Sharpe
Together, we have built a legacy of care, resilience, and community. As we reflect on 20 years of impact, we invite you to be part of the next chapter in the fight to end ALS. Julie reflects:
” These are just a few moments over the last twenty years. I have made so many friends and experienced so many incredible things that it is hard to pare down the memories. I am inspired to continue working toward therapies, interventions, and ultimately a cure. Together, we will end ALS.”