August Spotlight Article - Richard Dickmann: A Beacon of Hope for ALS Warriors
Richard Dickmann is channeling the loss of friends and loved ones into a powerful motivation to support others affected by ALS in the tri-state area. He leverages his business acumen, relationships, and entrepreneurial spirit to strengthen the ALS community, driven by a purpose to improve the lives of those in need.
Background
A long-time resident of Covington, Kentucky, Richard owns Dickmann’s in Fort Wright and Smoke Justis in Covington. In 2005, his dear friend Kevin Heidrich reached out to share the devastating news of his ALS diagnosis. Initially unfamiliar withALS, Richard quickly learned through his unwavering support during Kevin’s seven-year battle with the disease. Tragically, ALS also claimed his aunt, and more recently, he lost another close friend, John Brucato.
Throughout these experiences, Richard has consistently been the one to show up, offering help, a listening ear, or simply his presence. These profound losses ignited a desire within him to take action. Inspired by Kevin's fundraising efforts for ALS research, Richard and his friend embarked on spontaneous outings to create joyful moments amidst the struggle.
A Journey of Support
As time passed, people began to associate Richard with ALS. He met numerous customers and friends who shared similar experiences. When John Brucato was diagnosed with ALS in 2021, Richard drew upon his earlier experience to offer support to both John and his wife. He visited regularly and assisted them in planning a bathroom renovation, emphasizing the importance of acting early. This project gained momentum through the support of the Louisville community, Bellarmine University, and the swim team John coached.
Reflecting on his journey, Richard notes that everyone he has known with ALS has been remarkable, and it is heart-wrenching to witness their struggles. Each time he walks alongside someone navigating the ALS journey, he finds renewed motivation to assist others. He believes that these incredible individuals deserve to be honored by helping those currently facing similar challenges.
Community and Purpose
Part of Richard’s vision is to welcome those who have lost loved ones to ALS into a supportive community, reminding them they are not alone. He encourages them to transform their grief into a purpose that aids others in similar situations.
In 2024, Richard assembled a passionate team, many of whom had also lost loved ones to the disease, forming the group Q4A Cure. They hosted a family-style barbecue on Court Street, raising an impressive $30,000 for the ALS Association, and organized a walk to the Great American Ballpark to honor those affected by ALS.
In 2025, the group rebranded as Que4Care, shifting focus to patient care through equipment and support. This year, Richard and his team raised over $67,000, hosting their second BBQ Street Party and another walk to the Great American Ballpark. The week leading up to the events featured four nights of Sippin’ 4 Lou Happy Hours in the Smoke Justis Bourbon Lounge. Richard also secured over 100 bottles of an exclusive Que4Care Old Forester barrel pick, featuring logos from Always Lifting Spirits, ChairForce 1, and Operation Ramp It Up.
The week was filled with fellowship, love, and awareness. Richard’s generosity with his time, talents, and resources is inspiring, and he envisions an even bigger and better year ahead, all to support ALS warriors in the community.
Looking Ahead
Richard's unwavering commitment has not only brought hope to those affected by ALS but has also inspired countless others to join the cause. His future vision includes expanding Que4Care's initiatives to reach even more individuals, providing essential resources and support to families facing this challenging disease. Richard plans to collaborate with local businesses and community leaders to establish a robust support network that extends beyond immediate events, ensuring year-round access to necessary medical equipment and care services.
Richard's story exemplifies the strength of community and the profound impact one individual can have when fueled by compassion and a desire to help others. As Que4Care continues to thrive, Richard remains dedicated to his mission of uplifting spirits and providing hope, one event at a time. He firmly believes that together, with kindness and determination, we can significantly improve the lives of ALS warriors and their families.
July Spotlight Article - Lorri Carey
Lorri Carey’s mantra is Go Be Great! This is taken from Joshua 1:9 “ Go Be Great. Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord will be with you wherever you go.” Lorri’s ALS journey is living this verse out loud every day.
Lorri’s ALS journey started in December of 2003 with a car accident. She was driving home in the slow lane on I-75 at night from a work function. A semi clipped the back corner of her car, spinning her car two times. The car ended up against the median in the high speed lane facing oncoming traffic. Somehow she did not hit any other cars, but her life flashed before her eyes. She was shaken up, but was not injured. However, just to be cautious she went to the doctor the next day just to be checked out. At that appointment she shared that she was planning to come see the doctor in January so she could ask about a few physical changes she had been experiencing. She asked why at age 38 she couldn’t open a water bottle anymore, and why she was getting bad cramps in her legs, and why her legs were suddenly twitching.
Lorri experienced the typical ALS journey of seeing various doctors with no real answers. She was sharing her frustration with a doctor friend who got her into a neurologist very quickly. Lorri remembers it was Friday the 13th and the appointment was after hours. After the exam, the doctor asked what she knew about ALS. She shared what she knew about it from the internet, specifically 2-5 years to live and no cure. The doctor confirmed she had ALS. Leaving the appointment, all Lorri could think about on the way up in the elevator was, “When we get back outside, what would the world look like now that I am just 38 and was told I only have 2-5 years to live?” When she got outside of the office building her brain could not quite grasp that everything was carrying on around her exactly how it was before getting the crushing diagnosis. She noted that in that moment, she knew she would LIVE life with ALS the best she could since the world around her wasn’t going to change. She proceeded to get two more opinions, but both concurred that ALS was the diagnosis. That was 21 years ago.
Lorri was a very active 38 year old. Lorri and her husband, Paul were raising two boys, Paul Jr. and Christian who were 13 and 11 when she was diagnosed. Lorri was working as a National Account Manager, traveling a lot for work, taking Jazzercise, and busy parenting two active boys. When she was diagnosed the doctors told her to not exercise, because she would burn out the motor neurons that eventually she would need to walk. She quit exercising for a year and felt worse from not moving her body. So she decided to start exercising how she wanted such as Jazzercise and just made modifications for herself. She says that she has not been able to lift her arms for 20 years. She continues to work on this in physical therapy, but she questions how much of not lifting her arms is from ALS and how much is from not lifting her arms for 20 years.
Lorri feels that one of the reasons she has been able to keep going is because after that one year she has never quit. She is very independent and active. She feels that when you quit moving however you can, you lose muscle mass quickly and so she has made a concerted effort to keep on moving from walking, hiking, bike riding, traveling, and whatever else she finds safe, fun and interesting.
Lorri has been a pioneer in sharing hope and inspiration with others through her podcast, “I’m Dying to Tell You,” that was launched in March of 2020. Lorri has met so many incredible people with stories that make her hopeful and give her strength. Although many of her podcasts are ALS related, she includes other people that she finds inspiring, such as Kanya Sesser, who was born with no legs and found on the side of the road and is now a para athlete and model. Some of the amazing people she have hosted on her podcast include: John Driskell Hopkins from the Zac Brown Band, Mitch Albom author of “Tuesdays with Morrie”, Andrea Lytle Peet who recently became the first person with ALS to complete 50 marathons in 50 states, Brian Wallach and Sandra Abrevaya founders of I AM ALS, Jim Scott, Broadway’s Aaron Lazar, Sara Bennett, and Brooke Eby.
Lorri primarily is a one woman show when it comes to her podcast. She contacts her guests, schedules interviews, edits, and runs her social account. Her son Christian assists with leveling out the sound and she has her friend Colin run her website. Her goal is to upload 2 podcasts per month. If you head to her website you can catch up on her 110 episodes. She has listeners across the world tuning in regularly for inspiration and hope.
As you’ll hear her sons introduce her in every episode of “I’m Dying to Tell You,” podcast, we agree Lorri is the “Queen of the Queen City” in our Cincinnati ALS community. She has raised ALS awareness and helped make connections to further support those with ALS. The Cincinnati area is fortunate to have such a leader and inspiration joining forces with us in this battle. She is definitely living out Joshua 1:9, and the Always Lifting Spirits Foundation is blessed to get to know her and collaborate with her for the betterment of the ALS community. Go be Great!
June Spotlight Article - Sherry Okromansah
Sherry Okromansah, at 48 years young, is bravely confronting ALS just as she has faced many challenges in her life—with faith, knowledge, perseverance, and the unwavering support of her family.
Sherry has always had a passion for learning. She graduated from Walnut Hills High School and went on to earn a diploma of nursing from Christ Hospital school of nursing, a Bachelor’s from Indiana Wesleyan, and a Master’s from Troy University. At the time of her ALS diagnosis, she was pursuing a Doctorate of Nursing at Troy University, Her career in healthcare has seen her excel in various roles, including nursing, case management, and leadership positions, always with a focus on helping others. Her most cherished role was at St. Joseph Home of Cincinnati, a residence for children with disabilities, where she took pride in being a voice for those who couldn't speak and showing love to children with diverse family dynamics.
Sherry’s ALS journey started in 2022 when she noticed changes in her dexterity after a spinal fusion surgery. Three months post surgery her right arm became weak. Sherry’s road to diagnosis had her consulting a shoulder specialist, several neurologists, a hand surgeon, an orthopedic surgeon, and a pain specialist. All leading to misdiagnosis. In March of 2024 Sherry had a bad fall which resulted in severe injury to her throat, a paralyzed vocal cord and throat bleeding. Then in April she experienced increased right foot dropping and tripping. At one point she was at work and took herself to the emergency room. She Was admitted that day and was in the hospital for a week, still misdiagnosed with autoimmune disease. She was referred to UC Gardner neurology clinic. Finally, in June of 2024 she was diagnosed with ALS.
Sherry has always drawn strength from her faith, especially now as she navigates the challenges of ALS. She finds inspiration in David from the Bible, a man known for his deep connection to God. Despite life's ups and downs, Sherry continues to feel God’s presence, relying on the comforting words of Romans 8:37-39 NIV:
“No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.”
This verse has been a constant companion through her life’s journey, including her two mission trips to Kenya and her current battle with ALS.
Sherry is lovingly supported by her mother Beverly, her son Savion, her boyfriend, and her siblings. Sherry is unique in that she has received support from our ALS Triple Team. Always Lifting Spirits provided Sherry with a lift chair, Chair Force 1 Foundation provided a wheelchair accessible van (which the family calls the 12th disciple), and Operation Ramp It Up built a ramp into her home. Sherry will be honored as the First Responder at the June 2, 2025 Cincinnati Reds Game.
April Spotlight Article - Jim Robb
Laughter Is the Best Medicine for Jim Robb
For Jim Robb, laughter truly is the best medicine. He and his wife, Maria, are a generous, fun-loving couple
who have shared 32 years of marriage—and a lot of laughter—through life’s many ups and downs.
Jim served as a Cincinnati Police Officer for 30 years. During that time, he worked as a D.A.R.E. officer for six years and later served as a school resource officer in several schools. After retiring, Jim continued to give back by improving security across numerous parochial schools. He played a key role when the Archdiocese hired him to lead a security summit that brought together Catholic schools from Cincinnati to Columbus.
Jim dedicated many years to coaching. He initially served as a coach at St. Lawrence School for an extended period. Following that, he took on the role of soccer coach at Seton High School. After his time at Seton, he moved on to coach girls' soccer at West High before returning to Seton, where he coached soccer and led the bowling team for 20 years. One of his most cherished coaching experiences was the opportunity to coach his son, Drew, at Elder.
When speaking with Jim and Maria, it’s hard to believe one couple could have endured so much. In 2016, while attending Senior Night at Elder High School, Jim and his son were grazed by stray bullets. In 2019, Jim was diagnosed with multiple myeloma. Then, in 2021, Maria was also diagnosed with cancer. So, when Dr. Neel delivered Jim’s ALS diagnosis in August 2023, their response was not emotional, but pragmatic: “Okay, what’s the plan?”
Like many, Jim’s road to an ALS diagnosis was long and frustrating. It began in 2022 with slurred speech. He saw a neurologist, oncologist, ENT, and a specialized ENT before finally meeting Dr. Neel. By then, Jim and Maria suspected ALS, so they were mentally prepared for the confirmation.
Jim believes his cancer treatment caused significant muscle and fat loss, which may have triggered ALS. Before his illness, he lived an active lifestyle—riding bikes, bowling, playing baseball and golf.
Since his diagnosis, Jim, his family, and their friends have been strong supporters of the ALS community. They hold an annual golf outing to raise money for ALS foundations, support families facing ALS, and award two scholarships—one to a Seton High School student and another to an Elder High School student.
This year’s golf outing takes place on Friday, May 9, 2025, at Aston Oaks Golf Course.
There are two tee times: 7:30 a.m. and 1:30 p.m. Even if you can’t participate in the golf, you’re welcome to join the fun:
Bid on silent auction items
Enter to win themed gift baskets
Try your hand at ring toss to win your favorite beverages
Join the “split the pot” and “barrel of cheer” raffles
Enjoy the beer garden and live music from 4 p.m. until the party winds down
A one-time $25 donation grants you access to the festivities, where you can enjoy drinks and mingle with Jim and friends.
More Information:
Facebook Page
Volunteer Sign-Up
Donate via Venmo
Although Jim can no longer do many of the things he once enjoyed—like working out and bowling—he still plays golf about three times a week. He also loves spending time with family, friends, and his dog, Roo.
People used to joke about Jim having six kids. These days, Jim is grateful for every one of them. They take turns “babysitting” him so that Maria can continue working and have time for herself.
Jim shares this outlook:
“People die every day without notice—heart attacks, car accidents. I, however, am blessed to know what is coming. I get to hug everyone, tell them I love them, and say goodbye.”
With that perspective, Jim carries on—feeling like the luckiest guy in the world.
April Spotlight Article - Honoring Jeff’s Legacy
A decade is quite a significant period of time. For someone as remarkable as Jeff Weber, it’s no surprise that an organization established in his memory is thriving and broadening its impact. Jeff's kindness and commitment to helping others are reflected in the work we do at Always Lifting Spirits. This commitment is evident as family, friends, and colleagues return each year to support our cause. This year, we proudly celebrate our 10th Annual Event. We are incredibly thankful for the continued support, which not only allows us to assist those in our community battling ALS but also keeps Jeff's spirit alive.
Our board members have shared their thoughts on what celebrating 10 years of events means to them.
“Always Lifting Spirits was born out of a deep love for Jeff and his courageous fight with this devastating disease. I couldn’t and wouldn’t allow his memory to fade. Honoring Jeff by helping others is and always will be my heartfelt passion.
We will never forget.”
“The foundation started by Nancy was and is the best tribute to carry on. Jeff passed away in August and our mother proceeded in March. This was a very dark time for everyone, but our family has had our share of ups and downs and it was time to get up again.
To give comfort to someone suffering and the caregiver is exactly what Jeff would do.
Cheers to 10 years!”
“The Always Lifting Spirits foundation was started by Nancy to help fill a void when Jeff passed away. We were at a loss as to what to do. We wanted to keep his memory alive. Helping other ALS patients seemed the best way to do it. We decided he would be the first one to recommend a lift chair.We started very small and little by little it has grown.From 1 chair to 100.
Helping others while honoring Jeff’s name is what makes the foundation special.”
“I have always felt that after Jeff passed away that we didn’t have a choice but to do SOMETHING for others in the ALS community. The outpouring of love and support from the time he was diagnosed until now is really overwhelming. If you look at our board, we share a lot in common obviously but what stands out to me is everyone involved was raised to be selfless people! Without a doubt, Jeff was as selfless as it gets. It’s an amazing feeling to be able to help people in a small way. It is also a lot of fun for me to help throw a great party every year in Jeff’s honor. The last thing he would ever want is any attention so it makes it even better when we put his face on posters, pictures, etc..”
“It’s been quite a journey from our first fundraiser to number 10. I’m constantly amazed at people’s generosity. It says a lot about the kind of person Jeff was when you see his friends and former coworkers continue to show up and support our cause. The fundraisers are a lot of work but every time we are able to gift a chair it makes it all worth it. ”
“As Jeff’s daughter, this foundation means everything to me. The fact that Nancy took the time to think of something that would honor my dad in such an amazing way is something I’ll always be grateful for. My dad was the type of guy who would drop everything to help out someone else and for us to be able to continue to do that for others makes me so happy. It is crazy to think we have been doing this for 10 years , and at the same time I hate that we still have to. Our ultimate goal obviously is to live in a world without the pain and suffering ALS causes, but in the meantime we will continue to help lessen the burden for these patients and their families. The support we have received is something that never gets lost on me and I will forever be grateful to those who have supported us in any way over the years! ”
“10 years is bittersweet to me. It means 10 years of helping ALS warriors but it also means my dad has been gone for 10 years. I am so proud of our family for sticking together during such a hard time and turning it into something positive. I can’t wait to see what we do in the next 10 years!”
We extend our heartfelt gratitude to everyone who has supported our foundation, enabling us to carry on Jeff's legacy through the meaningful work of Always Lifting Spirits in his honor.
March Spotlight Article - ALS Support Manual
As many of you are aware, it takes a community to come together in support of individuals on their ALS journey. Over the past year, we have been honored to collaborate with some incredible local organizations to enhance our support for our ALS heroes.
In true “west side” fashion, we kept running into Ben Coffaro from the Chair Force One Foundation. Our initial interactions arose from both organizations assisting Paul Tepe and his family, with us providing a lift chair and CF1 supplying a wheelchair-accessible van.
Thanks to Ben’s connections with the Reds, he kindly included Always Lifting Spirits and Operation Ramp It Up in the Reds Triple Play ALS Awareness Day scheduled for June 2024. It was an unforgettable day at the Great American Ballpark, especially meaningful for the Weber family, as Jeff was a devoted Reds fan. During our planning meetings for the event, we connected with other organizations supporting the ALS community, leading us to envision creating an ALS support manual to help those we meet navigate local resources.
In December, we were thrilled to publish the first edition of this manual, which includes:
Always Lifting Spirits - the Jeff Weber Foundation providing lift chairs
Chair Force 1 Foundation offering wheelchair-accessible vans
Kevin W. Donovan Foundation arranging trips or event attendance for pALS
Live Like Lou Foundation supporting families by building and connecting communities
Operation Ramp It Up supplying wheelchair ramps
People Working Cooperatively conducting essential home repairs
Team Gleason Foundation providing technology and equipment to enhance life experiences
Global Neuro YCare offering resources to help families discuss ALS with children
We were fortunate to partner with Joseph Berning Printing Co. to print our initial run of booklets at cost.
Each of the local charities has several copies of the Support Manual. When any of us meet someone facing ALS, this resource proves invaluable as they navigate their journey.
We look forward to including even more organizations in our second edition that support the ALS community in the Cincinnati area.
February Spotlight Article - David J. Curry
“Just one more day.” This is the mantra of David Curry. After spending even a brief amount of time with him, it becomes evident that David maximizes each day to its fullest.
At 80 years old, David is a husband, father, grandfather, and a courageous individual battling ALS. His professional journey spans 52 years as a college professor, with teaching terms at institutions including the University of Iowa, the University of Colorado Boulder, and international locations in France and Australia. He concluded his academic career with 34 years at the University of Cincinnati, where he specialized in Marketing and Statistics. David and his wife, Patty, have been retired for two years.
In retirement, David enjoys quality time with his family, particularly his three daughters—Monica, Olivia, and Lauren—and his grandson, Leo. He has also delved into creative pursuits, writing songs, books, short stories, over 20 editorials, and screenplays. As a member of the rock band “Third Degree Burn,” he has performed at local venues, including MadTree Brewery.
An athlete at heart, David was a ski racer during his college years in Boulder and skied many a slope over the years with his family. Jackson Hole being his favorite destination.
David's journey with ALS began after a hip replacement surgery in December of 2023. Initially excelling in rehabilitation, he soon faced challenges during his regular workouts, ultimately leading to a fall that revealed weakness in his limbs. Following a neurologist appointment in July, doctors suspected an autoimmune disease or neuropathy. By fall, after receiving four out of six infusions with no improvement, David was diagnosed with ALS in December of 2024.
Despite his diagnosis, David remained committed to completing his passion project—a book titled Fast Horses and Big Payouts, intended for his friends and grandson. Utilizing Microsoft Word's dictation feature and ChatGPT for assistance, he persevered to finish the book, which explores the world of betting, watching, and attending thoroughbred races. The foreword of this book reflects the essence of David Curry's character.
Currently, he is co-authoring a science fiction screenplay with his daughter Olivia, having completed 20 scenes thus far. As his hand strength weakens he relies on the use of technology to continue this collaboration with his daughter.
David is not only highly intelligent, talented, and successful, but also embodies kindness, humor, and inspiration. He faces the challenges of a devastating disease with unwavering determination, striving to embrace each day with the philosophy of living just “one more day” to the fullest.
To buy David’s book, simply click on the link Fast Horse, Big Payouts by David J. Curry. David has shared that the proceeds from this book will be donated to organizations that support ALS patients and research.
January Spotlight Article - Reflecting on a Year of Impact and Community
The start of a new year is a time when we pause to reflect on the past and set goals for the future. This year, we have much to look back on with pride and gratitude, especially concerning our efforts to support those affected by ALS. Each event and initiative has been a testament to the strength and generosity of our community.
Celebrating Our Heroes
Throughout the year, we shared many inspiring stories of those facing ALS. Their courage and determination in the face of adversity continue to motivate us to strive harder in our mission. These individuals are more than just names to us; they are our heroes and the driving force behind our efforts. You can find many of their stories on the archived articles page.
Memorable Events for a Noble Cause
Our 9th Annual Event at Wegman Company was a significant milestone, bringing together supporters and advocates united in their commitment to the cause. We also were a part of various other events that combined fun and fundraising, such as:
Beer for a Cause at Taft Brewpourium: The Taft Brewpourium hosted a special beer. For each beer sold $1 was donated towards our foundation.
Sip and Shop at Rustic Happiness: An event that perfectly blended shopping with philanthropy, allowing attendees to contribute to a worthy cause while enjoying a unique retail experience.
Walk to Defeat ALS: A heartfelt event where families, friends, and supporters walked together to raise funds and awareness for ALS.
ALS Triple Play Reds Game: A day at the Great American Ballpark with a purpose, where sports fans came together to support ALS initiatives. We were excited to join forces and get to know the ChairForce 1 and Operation Ramp It Up organizations.
Community Engagement and Sportsmanship
Community involvement was further showcased through several sporting events, including:
Harrison High School Basketball: The Harrison Athletic Department graciously deferred ticket sales into donations for us while spreading awareness about ALS.
Jim Robb Outing: The Always Lifting Spirits family were excited to play in this tournament honoring Jim.
Chair Force 1 Pickleball Tournament: The Always Lifting Spirits crew entered four teams to participate in the tournament.
Key Milestones and Achievements
This year also marked some key achievements in our ongoing mission:
Collaboration with JANZ: We began working with JANZ Medical Supply, enhancing our ability to provide lift chairs to those affected by ALS.
Creation of an ALS Support Manual: In collaboration with Chair Force 1, we have created an extensive guide aimed at providing essential information and support for ALS patients and their caregivers. This resource features eight nonprofit organizations dedicated to assisting individuals affected by ALS.
Delivery of Our 100th Chair: A significant milestone that underscores our commitment to improving the quality of life for those living with ALS by providing mobility and comfort.
Anticipating the Year 2025
Get ready to party on April 6, 2025, because we’re throwing our 10th Annual Fundraising Bash at Jim and Jack’s! We're beyond excited to celebrate Jeff Weber’s incredible legacy in style at this fresh venue. Expect a fabulous afternoon filled with delicious food, thrilling raffles, silent auctions, and all sorts of fun! If you can contribute to our silent auction or basket raffles, give a shout-out to Greg Weber, our Donation Coordinator at webs_45233@yahoo.com.
Keep your eyes peeled on our website and social media for updates on how you can join the fun and support ALS patients!
As we look back on the past year, we are filled with gratitude for the support and dedication of our community and donors. Each event, partnership, and achievement has played a crucial role in our journey. As we move forward into 2025, we remain committed to our mission and inspired by the heroes we serve. Together, we can continue to make a difference.
December Spotlight Article - Tom and Ann LeSaint
Tom and Ann LeSaint are a delightful couple living on the Westside of Cincinnati. Tom retired from his engineering career a few years back. Ann is a remarkably determined woman. Not only did she pursue her nursing degree later in life after being a Stay-at-Home mom, School/Church volunteer, and a Girl Scout Leader, but she also took part in the Chicago Marathon in her 50s, alternating between running and walking. She had always been an active and exercise-conscious person. They have unfortunately found themselves now part of the ALS community. Their journey to diagnosis, like many others, has been lengthy, with some wrong turns.
Ann began experiencing fatigue while traveling to attend her granddaughter’s college graduation in May 2023. On their way home, she choked on a candy bar, prompting Tom to quickly maneuver the car to assist her. In retrospect, this choking incident was a crucial warning sign. Their path mirrored that of many other ALS patients, beginning with visits to their primary care general practitioner and an ENT specialist, but yielding no answers. Ann's symptoms escalated to the point where she struggled to open a candy bar, along with unexplained falls and her voice became increasingly raspy.
Last December 2023, Tom and Ann traveled to San Francisco to support their son and daughter-in-law, who were welcoming their third child. Upon their arrival, Ann found it difficult to climb the steps to the family's apartment. Concerned about this and other symptoms, their daughter-in-law, an ER doctor, expedited their visit to the hospital where she works. Ann underwent two and a half days of tests, after which a neurosurgeon diagnosed her with ALS. The neurosurgeon was glad to hear that the LeSaints lived near Cincinnati because he had a colleague who could guide them through the process—none other than Dr. Neel. He even contacted Dr. Neel to arrange an appointment for them upon their return to Cincinnati.
Tom has taken on the caregiver role with the same diligence he applied as an engineer. He researches extensively to support Ann, gathers data, and advocates for her needs. Tom attended the Reds Triple Play Day at Great American Ball Park in June. While there Tom sought more information and connections. He met board members from Always Lifting Spirits and reached out with questions. Initially, in June, he felt a lift chair wasn't necessary, but by November, he recognized how beneficial it would be for Ann and decided to reach out again.
Now, Ann enjoys relaxing in her chair, pursuing her passion for reading, writing murder novels, and catching the latest Hallmark movies. Ann takes great pride in being a mother to four and a grandmother to thirteen. She has a particular love for country music, especially the song “Dirt On My Boots” by Jon Pardi, which all her children and grandchildren have learned and often send her videos of their performances. With a bit of "dirt on her boots," Ann continues to show resilience and determination in staying positive along this difficult ALS journey with Tom right by her side.
Ann and Tom LeSaint share a big THANK YOU to the Always Lifting Spirits Foundation.
November Spotlight Article - The Weber Kids
Jeff Weber is the oldest of the Weber Family. He lost his battle with ALS at the age of 48. Jeff’s siblings stepped up to support Jeff during his battle and continue his legacy today, by the work they do to support pALS in the tri-state area.
Jeff was a dad, brother, son, and friend that everyone loved and knew they could count on. He loved his family and with gentle humor had lots of fun teasing his younger siblings. It has been over ten years since losing Jeff, but his siblings still reminisce about growing up with Jeff.
Jennifer, the second born, shares:
Jeff was born April 3, 1965 and I was born March 28, 1966. We celebrated our birthdays together for ou entire childhood. As we got older Jeff would always tease me about how old I was for the 1 week we were the same age. How I miss sharing our birthdays.
Jeff’s Siblings: Jennifer, Amy, Sara, and Greg
Jennifer’s 1st and Jeff’s 2nd birthdays.
Amy, the middle Weber daughter shares:
A favorite memory of Jeff was the little cards he’d give my girls for each holiday with cash enclosed and his signature handwriting and always Love, Jeff, Ashley and Michelle. Family meant the world to Jeff. He loved holidays and everyone being together.
From Left to Right: Jennifer, Greg, Judy (mom), Sara, Amy with Jeff in the center.
Greg, the youngest Weber son shares:
Jeff was a natural athlete that was really good at any sport he played. What helped him succeed was his competitive drive and refusal to lose. I was lucky enough to play basketball with him and his friends for a few years in a men's league to see this firsthand but also was on the receiving end of many beatings in basketball, tennis and golf! I never beat him in anything that we played against each other. I had a chance, one time playing golf. Me, my dad and Jeff played one year in Hilton Head and I was playing very well and was winning as we got to the 18th hole to tee off! Now, I was sharing a cart with Jeff and one thing he could always do was get in my head and throw me off of my game. As we left 17 and drove to 18 he reminded me that I was beating him by 2 strokes and had a chance to beat him. We both teed off, he hit a beautiful drive right down the fairway and mine went out of bounds so I had to take a penalty stroke. Now, I am only up 1 stroke! My next shot I put on the green and he was in a bunker right off the green..At this point, I am feeling pretty good and confident that this was going to be my day! Jeff chipped out of the bunker and put his ball within 5 feet of the cup. I had about a 25-30 yard putt but again, was playing well and had a chance! Since I Was further from the cup, I had to putt first. As I was set to putt, he magically had a coughing attack to break my concentration. He apologized and let me putt. I put it close but not in and at this point, I was thinking that the worst case scenario is we tie which is just as bad as a loss but I Would take it! He sank his putt and all I had to do was sink mine and it's a successful day! I got to my ball and while I was reading the green he kept moving into my sight line as a distraction. He also kept reminding me that if I do sink the putt, we would tie and have to play 18 again until one of us wins. Usually, my putt would have been a gimme and in fact, my dad told me to pick it up but Jeff said NO WAY! I had to earn it. I was confident that from 2-3 feet, I would sink it and live to play another hole. Between him distracting me and getting in my head, I hit the putt too hard, pushed it past the hole and now had to face the fact that I lost! An absolutely crushing defeat and what made it worse was how hard he was laughing when I missed the putt. He tried to make me feel better by saying, "Greggy-Boy, one of these days you might beat me but it's not today!" I never did beat him in anything! Even when I was young, he would never let me win..he'd let me get close but that day on the golf course was my shot!
Sara, the youngest of the Weber kids shares:
My favorite memory of Jeff is all of our vacations we took together. Jeff , Ashley and Shell and me and my boys along with Judy and Tom went on vacation together every summer. He loved riding his bike to the beach and staying there until 6pm, just like me. Everyone else went back to the house around 4pm and we would still be down there- he would sleep and read. But something funny always happened to him on the vacations- usually the waitress would forget to bring his food at dinner or one year he almost got struck by lightning while sitting on the screened in porch reading a book. One year he and I had to rescue one of the kids who got their head stuck in the stairway railing ! It was always something. My kids would end up sleeping in his room or in his bed or one year they ended up under his bed ! He loved our family vacations and he was so happy and relaxed.
Jeff served as best man for Greg’s 2001 wedding.
Jeff would love a little good friendly competition among his siblings and he would really love us helping other pALS. This month, there's a showdown between the East and West side of the Queen City to determine who can raise more funds for ALS. Every dollar equals a point, so let the games begin! Team West, represented by Greg and Sara, is ready to rumble, while Team East, led by Jennifer and Amy, is fired up, too. Unfortunately ALS is not biased to one side or the other. ALS has reached each side equally and has even crossed the river to Kentucky. Which siblings will win???
To cast your vote click on the link to our November campaign page. This Campaign is closed Thanks to our generous donors we raised enough money to cover our next chair.
Jeff and Sara 2000
July Spotlight Article Kevin Rowland
How does God and AI join forces? That convergence might not seem obvious to many, but it is apparent to the ALS community that they are joined together by a software engineer named Kevin Rowland.
Kevin is blessed to be married to Jane and raising 3 kids. Besides being a software engineer at a company that he helped build, he enjoyed hacking, programming projects, and all things technology related. He is a music lover and enjoyed strumming the guitar and playing piano
The Rowland family was flourishing in 2019 when Kevin’s first symptoms appeared at the age of 47. The symptoms started by Kevin dropping things with his right hand. At first Jane and Kevin felt that he was developing carpal tunnel, which Kevin was concerned about because keyboarding was how he made a living to support his family. Kevin is one of the lucky ones in that his diagnosis was relatively quick in comparison to many stories that he has heard. He had an EMG for the carpal tunnel surgery that ended with a referral to a neurologist. The neurologist ordered an MRI and a more thorough EMG on multiple quadrants of Kevin’s body. This led to the diagnosis of ALS.
Jane and Kevin were no strangers to tragedy and hardship, so they perceived Kevin’s diagnosis as a continuation of their faith journey. Kevin shares that “this kind of news hits you like a head on collision at high speed without a seat belt. It takes a little time to be in slow motion and thrown through the windshield and hit the ground.”
As most husbands and fathers do, Kevin went into survival mode. He was initially told he had 9 months to live so he went into project manager mode, making sure his family’s financial future was secured. Kevin’s last days of walking and talking were spent isolated due to Covid. He now reflects that Covid was a blessing and a curse. Kevin and family couldn’t go anywhere, but they were together.
As many before him Kevin found himself at the ALS Clinic with Dr. Neel and joining the pALS and cALS support groups which helped a lot. The insight and experiences that the group had were very helpful as Kevin and Jane navigated this new terrain.
Kevin also worked closely with Team Gleason and Bridging Voice. He continued to use his experience and expertise in technology to help come up with technical solutions to problems that pALS were facing. He also assisted therapists at the Perlman Center. He shared his technical solutions with other families.
Kevin has also worked with researchers at Northwestern University. Kevin helped author a paper and poster submission to the 2023 Robotics: Science and Systems conference. Their presentation was entitled "Identifying Accessibility Barriers to Robotics Research".
Kevin lives by the quote by Padre Pio, “Pray, hope, and don’t worry. Worry is useless. God is merciful and will hear your prayer.” Throughout his ALS journey Kevin has put God first. Kevin’s faith and technical knowledge have paved the way for improvements for others facing this horrible disease
Click on the you tube link to hear Kevin’s story in his own words.
