After her uncle was diagnosed with ALS, Lily Hall, now a senior at Friendswood High School, took action. What she didn’t realize was that her passion would inspire an entire community to join the fight to end ALS.
Understanding the Impact of ALS
Lily Hall, like many high schoolers in Texas, is a busy student. She finds time for extra-curriculars, such as editing her yearbook and previously being a 3-year captain of the cheer team. Though one thing sets Lily’s high school experience apart from others—her uncle has ALS.
Lily describes the experience of finding out her uncle Craig had this terrible disease. At 10-years-old, she and her older brother would arrive home from school for her mom to break the news. “At that time period, I really didn’t understand what was going on,” she shared.
As his disease progressed, their family dynamic shifted. Lily recalls how they used to spend every holiday with her aunt, uncle, and cousins. However, since her uncle’s diagnosis, it’s been harder for the family to get together. At first, she didn’t understand this change, but over the next several years her perspective shifted.
“I started getting older, and I became more aware of what ALS was and how it affected people.”
When Lily came to a complete understanding of the gravity of ALS, it lit a fire in her. She wanted to learn more about the disease and spread awareness to those around her.
Finding Inspiration for the Cause
After Lily started high school, she was ready to join the fight against ALS. She shared that other family members who were involved in inspired her to pursue her own ideas. Her father frequently raised funds at his job. And her brother supported a Walk to Defeat ALS at his university, Davidson College in North Carolina.
“My freshman year was when I started thinking about it,” Lilly noted. For several years, she brainstormed, and finally last summer, inspiration struck. One day, she attended a cheer practice to help get photos for the football program. The photographer edited a photo, incorporating all facets of the program—the team, cheer squad, band, dance team, trainers, etc.
My wheels started clicking. All those people play an important role in how our football games go. I want to incorporate every person that I possibly could—every sport and club from my high school—to get involved in this ALS project.
That’s when she knew that getting the entire school involved was key to her mission. Lily worked to secure a volunteer representative from each sport and club at her school to join the cause. The last thing she had to do was decide how to bring people together. She’d soon decide to host an Ice Bucket Challenge. “I wanted to do something fun and interactive, something that people would want to get involved with. And I knew an ice bucket challenge would be an exciting way to do it.”
As Lily started planning the event, she connected with another local woman with ALS, Lucia Boone, for support. It was through this friendship that Lily discovered the impact of strong community connections. Lucia’s entire support group, a.k.a. Lucia Love, were a tremendous help, offering volunteers and managing T-shirt sales for the event.
Friendswood Comes Together to End ALS
On October 6, 2021, Lily Hall hosted the FHS vs ALS Ice Bucket Challenge at her high school’s football field. She only expected students to get involved, but that was far from the case. More than 250 students, faculty, family, and community members joined the event. “It turned into something completely amazing that I never would’ve thought could happen,” Lily joyfully shared. “I felt so supported by my community and everyone around me, so loved.”
All in all, Lily only expected the challenge to raise a few thousand dollars. However, the FHS vs ALS Ice Bucket Challenge raised over $30,000 for the ALS Association of Texas. These funds will support crucial local care programs for Texans with ALS and critical research for a cure. “Never in a million years would I have thought I could’ve raised that much money!” she exclaimed.
A Message to Other ALS Youth
Lily wants to do more to support those living with ALS in the future by raising awareness to the disease. “I hope that more people around the world start to realize what it is…and raise the funds for it,” she shared.
When asked what she’d say to other youth who love someone with ALS, she encouraged them to be a helpful hand. “Be there to support that person…do the most that you think you can do.” Lily shared she also wants ALS youth to feel empowered to organize their own fundraising efforts. Whether it’s $5 or $30,000 raised, every penny brings us closer to a world without ALS.
Don’t be afraid…Just go for it and try. You never know what it could turn into… – Lily Hall
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Photos provided by DC Stanley Photography.
She recalls the difficult ALS journey her mother Jackie faced. Several years ago, Jackie started having trouble with her balance. Patricia laughed as she shared her mother was always a clumsy woman, so they didn’t think much of the symptoms. But after she also started having issues swallowing, the family searched for answers
Unfortunately, Jackie’s ALS symptoms progressed quickly, causing her condition to decline. She lost her battle with ALS in March 2020. Patricia stayed in Lubbock for another year to handle her mother’s affairs before moving back to Oklahoma. “I will stay involved and do everything I can for this group and ALS in general because it is so near and dear to my heart. These people really are my family now,” Patricia shared.
Ken Olson has lived in Texas since 1967. He and his wife Charlene have a background in law enforcement and emergency management. Ken was diagnosed with ALS in 2015 after experiencing drop foot and a complicated recovery from a bilateral knee replacement. “I’m the older dude with ALS in our group,” Ken shared with a chuckle.
Rebecca Talley was a runner who was very active in sports. She and her husband Tim met in university and were full-time missionaries in Kenya and Tanzania for 27 years. Rebecca also worked as an adjunct professor at Lubbock Christian University. She retired in 2019 after being diagnosed with ALS in March of that year.
Bruce Gilliam played softball for many years before being diagnosed with ALS in 2019. Today, the disease has progressed to his foot, legs, and it’s now affecting his right hand. That doesn’t stop him from coaching a senior softball team in Lubbock or spending time with his wife, Raquel, and rescue pup, Mia.
For many in the group, their first encounter with ALS was when they or a family member was diagnosed. They want that to change. The group discovered the Walk to Defeat ALS and decided that’s where they would get started.
Last year, the group had plans to do a big BBQ cookoff to raise funds for the Walk. However, due to the unexpected circumstances of the pandemic, the team participated virtually. This year, they’re back bigger and better than ever.
Not only does the team hope to raise awareness, but they also hope to attract better resources in Lubbock. Amanda noted that while there’s a population of ALS patients in Lubbock, there aren’t many doctors equipped to treat ALS nearby. “I’d love to see more of our medical community involved in ALS.”
The group hopes that the efforts of the Walk will help encourage other medical professionals in Lubbock to join the cause. It’s important to have knowledgeable professionals who can guide those experiencing ALS as they navigate treatments and those who claim they have solutions.
During a family trip to her mother’s homeland, France, in 2019, Jeanine began speaking slowly and quietly. At the time, the family thought she was just experiencing issues with acid reflux, but when her speech continued to deteriorate, they decided to seek help from a neurologist.
After the doctor ruled out any cognitive impairments, he suggested that Jeanine see a neurologist in an ALS clinic. The family would have had to wait months to get an appointment at UT Southwestern’s ALS clinic, so they began to search elsewhere. Through family physician connections, Jeanine was able to get an appointment with the Cleveland Clinic’s ALS specialist within a few weeks. After additional testing there, it was confirmed that Jeanine had a form of ALS called bulbar ALS.
Following her mother’s ALS diagnosis, Claire reached out to friends who had experience with the disease. They told her about the Walk to Defeat ALS, and encouraged her to get involved.
“ALS is one of those things that you don’t know about or understand much about it until it affects you personally. It took me a while to understand what ALS is. It’s very confusing, and you’re looking for an answer of why it’s happening. I think it’s been eye opening for our family and close friends to learn about ALS is and the cruel impact it has on its victims and families. Getting involved in the Walk has given us something actionable that we feel like we can do because we have no control over the disease. I think it’s important to the community, and I’m really excited to go do the walk and be with other families and see people who have gone through the same thing.”
Sadly, Jeanine passed away on Saturday, October 2 of 2021, after her strong and courageous battle with ALS. The disease spread quickly over the preceding weeks to where Jeanine could no longer walk, sit up, or use her hands, while being aware of it all. Claire, her family, and Team Toujours Provence will be walking in memory of Jeanine and are committed to continuing their efforts with the ALS Association of Texas.
Neurologist Dr. Carlayne Jackson leads the ALS multidisciplinary clinic at UT Health San Antonio. This year, the clinic reached an incredible milestone of serving the ALS community in Texas for 25 years. From 1996 to 2021, their mission remains the same—provide excellent multidisciplinary care for Texans living with ALS.
A patient’s daughter approached Dr. Jackson’s team with an opportunity to partner with Doctors Hospital at Renaissance in Edinburg, TX. That hospital would provide PT, OT, and speech therapy, and Dr. Jackson’s team would secure the rest of the team. Dr. Zuka Khabbazeh, a neuromuscular trained physician, expressed interest in leading the team.
The culture that we’ve been able to develop is one of hope and positivity and not doom and gloom. There’s a lot of laughter. There are some tears. But there’s a lot of laughter and joy that’s shared between team members and patients and caregivers, and that’s unique.
Rupesh Kotiya grew up in North Carolina and moved to Dallas, Texas fifteen years ago after spending some time in New York. Siobhan is originally from the UK, and after dating long-distance for a while, she moved to Dallas the same year. Today, they are married with two wonderful boys, Ronan who is 10 and Keaton who is 8.
In that moment, everything changed for the Kotiya family. Their sons were only 4 and 2 years old at the time. Rupesh still had a successful career as the VP of Sales in North Texas and Oklahoma for Mainstay Investments, a division of New York Life. Nothing would be the same, but they would not let ALS get the best of them.
Despite the challenges of a new diagnosis, Rupesh continued to work full time for two years. He had an impressive career as the VP of Sales, and it was only after it became unsafe for him to drive that he retired.
By the time 2020 came around, Rupesh felt his symptoms more in his arms, legs, and hands. It became more difficult for him to walk without a walker and now he uses a motorized wheelchair. In that same year, his doctor recommended that he have a trach placed and he is now on a ventilator 24/7. Even still, Rupesh doesn’t let that stop him from making memories with his family.
The Kotiya family previously supported other walk events, but after connecting with ALS Texas, they decided to support the organization. “Even though the prognosis is never good and there is no cure, maybe we can be the ones to help find the cure,” Siobhan shared. They joined the Texas Walk to Defeat ALS under the team name, Friends of Rupesh.
Siobhan hopes that Rupesh’s legacy will have a lasting impact on their two children. Already, their oldest son Ronan, has been inspired by his father. He wrote a book about his father’s ALS journey. “The book is written from the perspective of a 10 year old and aims to provide hope that you can still do many things, e.g., go on holiday, attend parties and most importantly, enjoy life with your loved ones”. What started out as a summer project turned into a fundraiser. Ronan has sold over 600 books and is close to raising almost $7,500 to benefit Texans with ALS.
Ronan isn’t the only one inspired by Rupesh to support the ALS Texas mission. Six years ago, one of Rupesh’s close friends created the “Friends of Rupesh” golf tournament to raise funds for the ALS Texas mission. This year marks the sixth anniversary of this event to honor Rupesh.
She noted how ALS Texas supports her family with resources like a shower chair. She also discussed how the North Carolina chapter is equipping them with a power wheelchair to use while they travel to the state where Rupesh grew up.
You can support Texans with ALS like Rupesh this year at the Texas Walk to Defeat ALS! With both virtual and in-person options, you can walk YOUR WAY! Register in the city nearest to you and walk wherever you want on Saturday, October 30. Learn more at alstexas.org/walk. Together we will create a world without ALS!
Even from a young age, Norman’s grandmother instilled in him the importance of faith. It kept him strong when he moved to the U.S. from Jamaica as a child, and it led him to become a Chaplain in the Army. Norman served in the army for 32 years, 24 of those being as Chaplain, before retiring in 2016.
Today, Norman and Dee, his wife of 41 years, live in San Antonio. They have two daughters—one who lives with them at home and the second who recently got married and is teaching in Korea.
During this time, virtual support groups kept the Jones family connected with the ALS community. “You’re able to express your emotion and your struggle. And then you get advice from others how they handle their struggles,” Norman shared.
Besides the hope of finding a cure, Norman, and Dee hope that researchers will discover ways to detect ALS early and provide treatments to improve quality and length of life with the disease. “I have a lot of hope,” Norman shared.