Rhema Jones, Author at ALS Texas

A Note from Tonya: What’s So Funny?

January 1, 2022 by Rhema Jones Leave a Comment

A Note from Tonya: What's So Funny?

As we begin another new year, I am starting it off with a wager, and I’m betting it all.

I bet that not a single person in our ALS Texas community laughed with joy when your neurologist said the letters A L S. ALS is anything but a laughing matter-for individuals living with ALS, their closets loved ones and caregivers, extended family members, friends, and for our entire ALS Texas team.

As we all lock arms to tirelessly advance funding for research and clinical trials, to support the 12 incredible multidisciplinary ALS clinics we have throughout the state- and as our ALS Texas team does all that we possibly can to help ease the burden for Texans living with ALS, we can, however, travel the journey together…and with laughter and joy.

Laughter and joy, along with a sense of humor, can help lead to a boost in overall well-being, morale, communication skills, and quality of life. Let’s keep in mind that overall well-being is not only related to our physical wellness, but also to our mental and social health. Let’s also keep in mind that for our friends living with ALS, communication skills are available in several different ways.

Humor isn’t just about laughing and having fun, although that’s a big part of it. It’s also an effective tool in lifting plunging spirits; a well-established notion that’s 100% supported by scientific research. The curative power of laughter, along with its ability to relieve stress and burnout, may just be one of the greatest medical discoveries of our time.

Humor, especially during extremely stressful moments, has the benefit of acting like a “release valve,” relieving tension — if even for a moment — so everyone can re-set and re-evaluate. It can help us travel emotional tunnels and complete stress cycles. It is indeed the glue that holds our most important human connections and relationships together.

Being able to find ways to laugh and things in which to laugh at can be great for our quality of life, no matter our point in life.

Laughter relieves stress, and laughter is an excellent defense mechanism. Some people may not always feel like being angry, sad, or scared at their current circumstances. Feeling amused by circumstances and finding anything to laugh at is a perfectly healthy way to feel and express yourself.

Laughing can improve moods and lighten a situation. Humor can be found most anywhere. Remember one of the words I mention and share most often? PERSPECTIVE.

It’s a workout for the body. When physically possible, a good belly laugh stimulates the muscles of the stomach and face and helps digestion. It produces happy hormones, pain-relieving endorphins, and tears – it’s as physically and emotionally therapeutic as crying without the sadness.

It’s good for the brain. Some academic researchers say that the brain enjoys laughter as well – endorphins help release tension and people feel better mentally.

It helps create valuable memories. Sharing funny stories and reminiscing about fun stories from the past can lead to lots of laughter and help bring everyone closer together.

It builds support and trust. Being around other people going through similar circumstances can help create strong connections, especially if you all can find humor in some situations. Our ALS Texas Connection Groups, caregiver groups, workshops and events are the perfect places to help find some humor, and to build that support and trust!

It helps you feel in control. Giving yourself permission to laugh at a situation can go a long way.

Tell me something good!

Comment below or email tonya@alstexas.org to share your funny stories, and how you’re adding laughter to your life. I’d love to hear from you, and in a final bet, I wager that many, many others would like to hear from you as well.

Happy New Year!
-Tonya Hitschmann, Director of Community Programs

Live, Laugh, Love & Pray: Rosalinda Steely’s Story

December 30, 2021 by Rhema Jones Leave a Comment

Live, Laugh, Love & Pray: Rosalinda Steely's Story

Rosalinda Steely has a rambunctious spirit and an infectious smile. From being a flight attendant to an athlete, to riding hot air balloons, she’s always lived her life with gravity-defying purpose. Now living with ALS, Rosalinda continues to bring light and laughter to those around her.

Rosalinda was born and raised in Newgulf, Texas. She is the sixth of eight children in her family. Rosalinda attended Wharton County Junior College before transferring to Texas Woman’s University in Denton, Texas, which was an all-women university at that time.

After graduating from college, she was employed by Daniel Industries as their bilingual secretary for the Vice President. Rosalinda left to become a stewardess for American Airlines, based out of Dallas. The job enforced high standards for hair and makeup, and required for stewardesses to remain single. Despite the rigorous policies, she enjoyed every moment, falling in love with cities along the way like New York City!

Eventually, Rosalinda settled down and left American Airlines. She later dedicated a decade of her life to serving others as a substance abuse counselor and as a volunteer for 10 years with the Houston Crisis Hotline. All the while, she raised three wonderful children, 2 daughters and her son, Travis who has been indispensable in assisting his mother whenever possible.

Rosalinda's Rambunctious Spirit

Throughout Rosalinda’s life, she has always been very active in sports, her favorites being basketball, volleyball, and bicycling. She’d continue cycling for many years after school. In the year 2000, Rosalinda experienced a serious ankle break during a biking accident that required five surgeries, and through today, she still has 2 plates and 8 pins in her left ankle. That accident however, didn’t stop her from pursuing other activities.

At 62 years old, Rosalinda started playing tennis. She continued to play, and sometimes even on the men’s teams, until five years ago when she experienced a rotator cuff injury which required another surgery. Around that same time, she met Bob at a Christmas party. The two have since spent the last few years building a beautiful life together. In February 2020, Bob proposed to Rosalinda, and they continue to make fun memories whenever they can.

New Changes

Back in October 2019, Rosalinda noticed a slight tickle in her throat. Just a few days prior, she’d recently had her flu vaccine, so her doctor believed it to be just side effects from having received the vaccine and prescribed antibiotics to alleviate her sore throat. The medicines didn’t help. She went back to her doctor who prescribed a higher dose of antibiotics. Those didn’t help either, and Rosalinda continued to experience discomfort in her throat.

Just a few short weeks later in November during a Thanksgiving trip to San Diego, Rosalinda’s speech was noticeably slurring. Throughout 2020, her ability to visit with specialists was limited due to the COVID-19 quarantine, however she was still able to undergo testing with neurologists, ENT’s, and was even tested for any signs of stroke, all to no avail. Then, in April 2021, she received her diagnosis. Dr. Stanley Appel officially diagnosed Rosalinda with Bulbar onset ALS.

Her rambunctious spirit and smile continue to bring joy and laughter to everyone around her. Now that she is living with ALS, that hasn’t changed. Today she still enjoys hosting elaborate dinners at home, setting her table with placemats, cloth dinner napkins and wine. Although swallowing has become extremely difficult, she and her fiancé Bob frequently go out for dinner at restaurants, and it is to everyone’s surprise she prefers her beer to be served in a wine glass!

The Biggest Loss

Losing her voice to ALS has been the biggest struggle of Rosalinda’s life. She is now confined to only using other methods of communication without her spoken words, but conversations often move too fast, and she cannot write quickly enough to be able to participate. People outside of her family don’t often show patience or grace when interacting with Rosalinda, which frequently leaves her feeling invisible. Both Rosalinda and Sandy sat in tears as Sandy shared how this disease is affecting her mother:

I see Mom wanting to participate in conversations and she wants to be engaged. It’s so frustrating because when we go out in public and Mom holds up a sign like ‘I cannot speak’, then they’ll begin to talk about her as if she isn’t there and address only me.” -Sandy Steely

Because of these challenges, her family has seen her spirit fade as she withdraws from conversations. They are desperate to hold onto their mother. “I want her to be able to advocate for herself now, knowing that she can still do many things,” Sandy shared.

Pushing Forward Through ALS

Rosalinda still has full use of her arms and legs. She walks, drives, cooks, shops and even makes trips to the salon herself. Though she’s lost her physical voice, Rosalinda is not letting ALS stop her from enjoying her life. She’s found new purpose in completing acts of kindness for her family and friends.

In February 2021, during the Texas freeze, Bob’s home was completely water damaged by pipes which burst due to the freezing temperatures. As a result, Bob moved in to Rosalinda’s home, and they worked together to repair and remodel Bob’s home as they began to build their lives together. In true go-getter fashion, Rosalinda jumped into action! Armed with a paper towel in her mouth to absorb saliva, and a paint roller in her hand, she alone painted every wall inside Bob’s house!

Rosalinda is also taking advantage of opportunities to travel and try new things. Every year she has travelled to San Diego to visit with her oldest daughter, Sharon and her family. This year, Rosalinda wanted to check another item off of her bucket list. So, Sharon arranged for Rosalinda and Bob to spend a lovely California evening riding in a hot air balloon over the California coast. Her next goal is to travel to Spain in 2022.

We're All in This Together

Rosalinda has found comfort in meeting other people living with Bulbar ALS through social media and support groups. “It’s amazing knowing I’m not alone and certainly learn what others are experiencing,” Rosalinda shared on her whiteboard.

On October 30, many members of her extended family all came to Houston to join her on the Walk to Defeat ALS to show their support for Rosalinda and others who are fighting ALS in Texas. She had team members from all across the country wearing lavender T-shirts in support of ROZZIE’S ROCKETS. Rosalinda feels hope knowing these efforts are supporting research for better treatments for ALS and most importantly, a cure!

Though her life looks very different today than it did two years ago, Rosalinda’s infectious smile and rambunctious spirit continue to bless those around her. She encourages others to not lose sight of their community as they fight this terrible disease:

Live one day at a time.
Listen to your doctors.
Live, laugh, love and pray.
We’re all in this together.

ALS is a devastating disease. The emotional strain ALS causes is heartbreaking. The physical and financial impact is great, but there is HOPE!

ALS Texas strives to support Texans living with ALS through equipment loans, support groups and critical research for a cure. Will you support these crucial resources? Make a gift today.

Together we can support Texans with ALS and their families. Together, we can find a cure!

ACT for ALS Act Signed into Law, Bringing Hope to the ALS Community

December 23, 2021 by Rhema Jones Leave a Comment

BREAKING ALS NEWS

ACT for ALS Act Signed into Law, Bringing Hope to the ALS Community

Today, on December 23, 2021, we’ve reached a groundbreaking milestone for the ALS community. President Joe Biden has just signed the Access to Critical Therapies (ACT) for ALS Act into law. The Senate voted unanimously to pass the Act on December 16, with it previously passing in the House 432-2 on November 4. This new law is over a year and a half in the making, being first introduced in June 2020. Since then, countless ALS advocates across the country have contacted elected officials over 30,000 times in support of the Act!

To see such tremendous support from our elected officials is proof that there is strong momentum in the fight against ALS. This law is a game-changer not only for those living with the disease, but also the future of ALS research.

Here’s everything you need to know about the two most important sections of ACT for ALS:

Increased Funding for ALS Research

One of the largest hurdles to ALS research is funding. ACT for ALS will alleviate some of that burden by providing researchers the support they need to study the disease. Section 5 of Act for ALS establishes a new Rare Neurodegenerative Disease Grant Program at the FDA.

Through this program, the FDA will award grants and contracts to both public and private entities to cover research costs. The funding would benefit not only ALS research, but also research for other rare neurodegenerative diseases in children and adults.

Specifically for ALS research though, ACT for ALS has secured $100 million in funding each year for ALS research (for FY2022 – FY2026). This is with the caveat that funding must be appropriated by Congress on an annual basis. This funding brings us one step closer to better diagnostic practices, treatments, preventatives, and ultimately a cure for ALS.

Expanded Access to Therapies and Treatments

Even with growing number of clinical trials for ALS, many patients are unable to participate. This causes many to miss their chance at potentially life-saving treatments. Section 2 of ACT for ALS aims to change this through the Grants for Research on Therapies for ALS program. It expands access to experimental treatments for patients who would otherwise be ineligible for ALS clinical trials.

These expanded access drugs are not covered by insurance, making federal funding crucial. This program would provide the necessary funding to entities for these investigational drugs. It does, however, require applicants to demonstrate that their expanded access program will not interfere with ongoing clinical trials.

What Comes Next?

ACT for ALS puts in place a long-term commitment on government entities in the fight against ALS. The FDA is now required to publish an ALS and Other Rare Neurodegenerative Disease Action Plan within six months. This document must detail how the FDA plans to support the development treatment to improve or extend the lives of people with ALS and other rare neurodegenerative diseases.

ACT for ALS also requires the Government Accounting Office (GAO) to publish a report within four years to the House Energy and Commerce Committee and the Senate Health, Education, Labor, and Pensions Committee. This report will review the performance of the new expanded access program and FDA research program. Additionally, the law creates public-private partnerships for these diseases, bringing together the NIH, FDA, and other entities in the search for treatments and a cure.

This amazing victory would not have been possible without the support of the countless ALS advocates across the country. We are also inspired by the brave people living with ALS who used their voice to make this a reality.

The ALS Association in tandem with I AM ALS, and the Muscular Dystrophy Association are deeply committed to advocating for those living with ALS. With this and the immense bipartisan support of ACT for ALS, it demonstrates that we are stronger together as we journey towards a world without this terrible disease.

Together, we can find a cure!

Positivity in the Face of ALS: Andrew Szabo’s Story

December 16, 2021 by Rhema Jones Leave a Comment

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Positivity in the Face of ALS: Andrew Szabo's Story

As a published author, marketing professional, and dedicated triathlete, Andrew has spent his life pushing the limits. Still today, even in the face of ALS, nothing holds him back.

Andrew Szabo grew up in England, though his family is of Hungarian heritage. In his early adulthood, Andrew moved to Chicago with Hyatt Hotels in 1980 where he meet his wife, Melissa. In April 1986, the two married and moved to Washington, D.C. where their two children were born. The family later relocated to Las Colinas, just outside of Dallas. Andrew and Melissa have lived there ever since.

In the 41 years since Andrew has lived in the U.S., he’s built an incredible life with his family while balancing an impressive career in customer service and marketing. Andrew has worked for some of the largest direct marketing agencies as well as smaller agencies. Over the last decade, Andrew struck out on his own to speak at conferences and push the envelope as an entrepreneur. He is also the co-author of Positively Outrageous Service, which has sold over 300K copies worldwide.

Through Andrew’s career he’s tapped into his positive spirit, working with national brands, hospitals, and cities to elevate their customer experience. “I love my business,” Andrew shared.

Pushing the Limits As an Athlete

When Andrew is not inspiring others with his marketing and customer experience knowledge or spending time with family, he’s being active. He started running while at university in the UK and became even more involved with the hobby after moving to the United Sates. He soon started to run long distance races, including the 1985 Chicago Marathon, the 1986 San Francisco Marathon, and the 1987 Marine Corp. Marathon, in Washington D.C. He has since competed in 3 other marathons over the years.

Andrew didn’t stop there. He started competing in triathlons in his 30s. Andrew later added long-distance bike rides to his regimen, completing more than 15 100-mile bike races. One of those races included the Hotter ’N Hell Hundred in Wichita falls in August 2019. It’s the largest biking event in North America. In an impressive feat, Andrew turned around and the next month in September 2019, he completed another triathlon.

Searching for Answers

That same year, Andrew started to experience twitching in his muscles. As an athlete, he just attributed it to his body recovering after intense physical activity. “When you work out, that usually dies down within 45 minutes to an hour,” he noted. However, the twitching would continue for a full day after a workout. He’d ask himself, ‘Ok, I worked out 15 hours ago. Why are things still twitching?’

The twitching persisted for almost six months. And when it came time for Andrew’s yearly physical check, his doctor became concerned. They sent Andrew to see a neurologist in January 2020 where he underwent EMG testing. Those results were inconclusive.

Andrew continued to do more tests and appointments for months to find answers. All the while, he noticed more unusual changes in his body. “I realized that I didn’t have as much strength as I did before,” Andrew shared. He started to worry even more after his family vacation in August 2020. During this trip, he attempted an open water swim and paddleboarding, both of which he struggled to complete.

He would resume testing after this trip, desperately searching for answers. By this point, his doctor had two conclusions in mind—either neuropathy or ALS. Andrew’s doctor prescribed treatments to rule out neuropathy, but the treatments did not bring any improvements.

A Shocking Diagnosis

Eventually, someone suggested visiting the Mayo Clinic for a secondary diagnosis. Andrew sent them all his test results and scheduled an appointment for late May. That month, Andrew received devastating news. “On Wednesday, May the 26^th, they told me I had ALS,” he tearfully shared. The diagnosis was a shock to both Andrew and Melissa.

Before ALS, Andrew was extremely active. “I used to workout 8 – 10 times a week…I used to mix it up, a lot of biking, running, swimming. I did a lot of yoga and HIIT classes, you know, all kinds of different things.” Today, simple tasks are becoming difficult to complete as he loses muscle mass in his upper body and hands. It’s difficult for him to write or cut things with a knife and fork. While he previously could swim a mile, he can hardly make 50 yards without becoming exhausted.

You know, people used to joke about me and say Andrew, you’re gonna be very lonely in your old age. You know you’re so fit, you know everyone’s gonna die before you. And then all of a sudden it looks like my expiration date is sooner than most people,” Andrew shared.

Despite the grim prognosis, Andrew is grateful that his legs are strong and that he can still speak and maintain his career.

Investing in the ALS Community

Following Andrew’s diagnosis, he and Melissa searched for support and community. Melissa shared how one friend reached out and highly recommended they connect with their local chapter of the ALS Association. At their first visit to the ALS Clinic with Dr. Heitzman, they met Tonya Hitschmann, the Director of Community Programs from ALS Texas. This encounter introduced them to our local programs like caregiver support groups, equipment loans, and educational programming.

Everybody has been extremely helpful to get us to where we are today to understand the reality, the financial, the things that we’re going to need the caregiving that’s gonna have to go into it, Melissa Szabo.

In the few months since they’ve connected with ALS Texas, the Szabo’s already feel like a part of the community. “We feel very blessed to have been connected into the ALS [Texas] Chapter and just the inclusiveness all the way around,” Melissa shared. They became heavily involved with the 2021 Walk to defeat ALS, even becoming the top fundraising team in Dallas.

Through ALS Texas’ programming, they’ve found connections with folks who understand the struggles they are facing with ALS. “Being able to connect with people that either have ALS, or have been caregivers to ALS is huge,” Andrew exclaimed.

Positivity in the Face of ALS

Andrew and Melissa are moving forward with glowing positivity in the face of a heartless disease. Andrew’s therapist recently told him, ‘For the people that handle ALS the best, I look for, I look for the three F’s—Faith, Family, and Friends.’ He and Melissa have those three things in abundance.

Andrew came to tears as he shared the vast number of people of faith who are praying for him not only in Texas but across the world. “We have a rich tapestry of friends and family that mean the world to us,” Melissa shared. And their family plans to continue living life as normal as possible, continuing to travel the world together and make memories.

These three pillars have given Andrew strength as he carries on. His life is far from over, and he feels God will use this chapter of his life in a powerful way. He hopes his story will bring more awareness to ALS so that one day, we can find a cure.

Your support is critical to helping us create a world without ALS. Will you make a gift?

Together, we can serve more Texans with ALS than ever before. Together, we can find a cure!

ALS Clinical Care and the Future of Research

December 11, 2021 by Rhema Jones Leave a Comment

On November 15 2021, ALS Texas was joined by Neurologists and Clinic Directors, Dr. Jeffrey Tramonte and Dr. Stanley Appel for a special panel discussion. During this exciting presentation, they discussed the growth of multidisciplinary care and where the momentum is in ALS research. Keep reading for a recap of this exciting panel!

Introducing Our Special Guests

Dr. Jeffrey Tramonte is the clinic director at the Emory Bellard ALS Clinic at Baylor Scott & White Health. He has over 15 years of experience working with ALS patients. In 2011, he started the ALS Clinic after treating famous football coach, Emory Bellard, who had ALS. With the support of Bellard and his community, funds were raised to begin the clinic. This year marks a decade of service to Texans with ALS for the Emory Bellard ALS Clinic.

The ALS Clinic at Houston Methodist began in 1982. Dr. Stanley Appel shared it was the first ALS clinic in the world to offer multidisciplinary care. The clinic became an ALS Association Certified Treatment Center in 2016, and next year, the clinic will celebrate its 40^th anniversary. “We’re still going, and we’re still committed to doing everything we can to help our patients,” he shared.

These clinics not only provide excellent care to Texans with ALS, but they also bring hope through research.

Research Updates from Houston Methodist

Dr. Appel is known as an innovator in the ALS research field hosting many clinical trials at his clinic. Most notable, he’s discovered a potential treatment that could halt the progression of ALS using regulatory T Cells, aka Tregs. He shared an update on the study during the panel

The latest study for Treg was powered to give them critical answers to the effectiveness of this treatment. But the COVID-19 pandemic has created some delays. Amid these difficulties, Dr. Appel is pressing forward.

“The data looks very promising, very exciting, and we’re really hopefully that in the future in a much larger trial not affected by COVID-19 that we can be successful in bringing new therapy to our patients.”

Houston Methodist not only hosts the T-reg Study but is also a site for the the HEALEY ALS Platform Trial. The platform allows for multiple drug treatments to be tested with one placebo group. This means more patients can participate and there’s a bigger chance they receive an experimental drug and not a placebo. Those living with ALS play an integral part in making these research breakthroughs. Without clinical trials, there’s no way to know the efficacy of a drug.

Research Goes Beyond Clinical Trials

There are often accessibility issues for patients who want to participate in clinical trials. “There’s not enough of them and there’s not enough places to go to get access to the research,” Dr. Tramonte noted. Unfortunately, there are also cases where patients are ineligible to join a trial, but they can still contribute to critical research.

One way Texans with ALS can get involved with research without participating in clinical trials is through the National ALS Registry. This database is the largest ALS research project ever created. It’s also the only population-based registry in the U.S. that provides crucial information to scientists about the disease. This information plays a crucial role in supporting ALS research across the entire country!

Clinical Advancements Over the Years

ALS multidisciplinary care has come a long way since it’s development in the 1980’s. Even in the last decade, we’ve seen massive improvements to the quality of care for those living with ALS. Dr. Tramonte notes that the biggest improvement he’s observed is in feeding tube placement. A decade ago, ALS patients had to do the procedure while their lungs were strong enough to handle the general anesthesia.

“The problem is, is that for a good number of our patients they had really intact chewing, swallowing, didn’t have any nutritional needs, but the lung function was declining.” This would leave many patients with a feeding tube long before they needed it. Today, the procedure can be done under local anesthesia, allowing those with ALS to wait longer before having a feeding tube placed.

Dr. Appel believes that the greatest advancement is in multidisciplinary care itself. “There’s no question that our patients are living longer with better quality,” he shared. He attributes this to the improvements in breathing treatments, like the Trilogy, and nutritional advancements through feeding tubes.

Challenges for Multidisciplinary Clinics

“The biggest challenge for us is institutional buy-in,” Dr. Tramonte shared. “Convincing hospital administrators, healthcare system administrators, why this venture is important.” From a business standpoint, ALS Clinics don’t benefit hospital systems, but they are so important. Clinic directors across Texas know that it’s crucial to share the life-saving impact of these clinics to their administrators.

ALS Texas is dedicated to funding these life-saving multidisciplinary clinics to give Texans with ALS access to excellent care. This is made possible through the support of our community! Despite the challenges of running a clinic, both neurologists have high hopes for the future of their clinics.

Dr. Appel and Dr. Tramonte were asked what they would offer in a world with unlimited resources. Both neurologists emphasized the importance of mental health. They wish to expand their clinics to cover those services through hiring more social workers and psychologists.

“Going through what to expect: the anticipation, the uncertainty, the anxiety, the depression—it’s profound. And not only does it affect the patients right? But it affects families, their caregivers. If we could provide mental health services, that would be fantastic.” Dr. Tramonte

The Future Role of Telemedicine

In the last year, telemedicine has expanded across the country. The concept existed long before the pandemic, but it was crucial in keeping patients connected to their care teams. But what does the future role of telemedicine look like?

Both neurologists agree, there are pros and cons to telemedicine. For some exams and treatments, they require in-person contact. However, there is no doubt that telemedicine significantly expands access to multidisciplinary care. As ALS progresses, it becomes more difficult for patients to travel, so digital visits keep those patients connected.

The approach changes from patient to patient, and doctor to doctor. For Dr. Tramonte’s clinic, it hasn’t met the needs of his patients, but he’s interested to seeing where integrations could improve care. Dr. Appel foresees telemedicine becoming an integral part of neurology in the future. Advancements in smartphones and other technologies opens the door to more possibilities.

What’s Next for ALS Clinics

Dr. Jeffrey Tramonte and Dr. Stanley Appel are eager to share their passion and knowledge about ALS with our community. There’s no doubt that the future of multidisciplinary care looks bright. From expansions to access, to extensions of services, more Texans with ALS are receiving the quality care they need.

To hear more from Dr. Tramonte and Dr. Appel about ALS clinical care and the future of research, watch the full event below!

Find a Multidisciplinary ALS Clinic

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Following Her North Star: Rebecca Talley’s Story

December 9, 2021 by Rhema Jones Leave a Comment

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Following Her North Star: Rebecca Talley's Story

Rebecca Talley’s faith is her north star. From her decades of experience as a full-time missionary to her wonderful marriage, to raising three beautiful daughters, it’s guided her every step of the way. Even after a devastating ALS diagnosis that has since stolen her voice, her faith hasn’t wavered.

Rebecca recalled growing up as a missionary’s daughter. At just one-year-old, her family moved to Thailand where she grew up learning to speak both English and Thai. While living there, her father frequently proclaimed, “We’re about to have an adventure!” Sometimes adding, “This is not the road we would choose to go down, but it’s an adventure. We’ll see where it goes!” This mantra and worldview from her family has led to a life of gratitude for every experience around the globe.

Her cross-cultural experience impacted her life for decades to come. Upon enrolling into Lubbock Christian University for college, Rebecca experienced some culture shock and awkward situations, but it also found her love. It was there she met her husband Tim Talley. “We actually were on the five-year plan at Lubbock Christian University and got married the day we graduated,” Tim shared. They were both 22 at the time.

A New Adventure

Shortly after their marriage, Rebecca was working in digital art when Tim joined the staff at a local church. That job sent them on assignment as missionaries and in 1985, they moved to East Africa to serve in Kenya. Rebecca reminisces how this missionary experience changed her perspective on life:

When we arrived in Kenya, my language was not understandable. My humor was not funny.
What I considered modest was immodest. What I considered immodest, was modest. My view of beauty was perplexing to people. My sense of ownership was seen as extreme selfishness. My expression of strength was taken as aggression. What I considered as necessities were seen as gross opulence.
There was a stripping down of my identities and a building in a different context.
I am so thankful for the chance to learn from the people I came to teach and be changed along with the people I came to change. We learned things we obviously didn’t know.

Rebecca and Tim played many roles in their community over their 27-years as missionaries. They planted churches, taught literacy programs, and developed communities. Rebecca invested a lot of time in the local women, teaching them how to read and write.

They would move to a rural area for 12 years, then in 1997 they moved to the second largest city in Kenya—Mombasa.

The Growing Talley Family

It was in this city that Rebecca and Tim raised their three daughters. “They were very much American…[they learned] American culture from our home life, but they had not really lived in America,” Tim noted. While the girls learned of American traditions at home such as football, the Talley’s prided themselves on also providing their children with cross-cultural experiences and broadening their horizons.

The Talley’s found time to explore while living in Africa. They climbed Mount Kenya, rafted the Nile, went on safaris, and regularly camped together. The children even climbed Mount Kilimanjaro which is the tallest peak in all of Africa at 19,000 feet.

Often, the children were the only Americans in their schools and they had to learn many languages to adapt. Despite these challenges, the girls enjoyed their upbringing as it taught them to appreciate the nuances of different cultures and experiences.

In 2005, they’d move to Tanzania and for their last three years they moved to the most rural village the family ever encountered. In this place, they ministered to local children through schooling.

Generational Passion for Missions

The Talley’s mission-mindedness runs deep in the family. All the while they served in Africa, Rebecca’s own siblings were scattered across the globe, from South America to Asia. And Rebecca and Tim’s heart for sharing the gospel trickled down to their own children.

Eventually, their daughters would all move back to the states to attend Abilene Christian University. Today the Talley’s have three grandchildren and one on the way. Their oldest daughter and her husband are now third-generation missionaries, working for Pioneer Bible translators. They currently live on the edge of a refugee camp in South Sudan.

Tim chuckled as he noted, “They make our experiences [as missionaries] look pretty timid actually.” In a way, they are carrying forward a family tradition of raising their children as missionaries. Rebecca and Tim are very proud of all three of their children and the lives they are building across the globe.

Rebecca and Tim moved back to Lubbock, Texas in 2012. Soon after, Rebecca jumped into college ministry. She finished a master’s degree at Lubbock Christian University and taught cultural anthropology for four years.

The Talley’s also began working with international students at Texas Tech University, where over 2,000 are enrolled. They’d host meals and connect with students of all different faith backgrounds. “We really were the biggest learners as much as we were going to teach,” Tim shared.

ALS Changed Everything

It was in 2017 that Rebecca first stated noticing weakness in her left hand. Tim recalled how Rebecca was very athletic. She did karate and was an avid runner. Upon visiting her primary care provider, they thought she just had a pinched nerve.

Rebecca and Tim weren’t convinced, and they consulted with a neurologist. ALS wasn’t suspected at first, but the couple decided to meet with more doctors to get a second opinion. In 2018, Rebecca’s health problems continued to worsen, so the couple traveled to a neurologist in Dallas. That doctor suspected ALS, but they needed further testing to confirm. And in winter of 2019, they visited the Mayo Clinic in Arizona where it was confirmed. Rebecca was living with ALS.

From that moment, nothing was the same for the Talleys. Rebecca could no longer run or continue her dream of teaching. They started attending the ALS Multidisciplinary clinic at Texas Neurology in Dallas where she continues to see Dr. Martin. And, by the summer 2019, Rebecca was already in a wheelchair and had a feeding tube placed.

ALS has taken Rebecca’s voice and she now relies on technology to communicate. She continues to lose mobility in her hands and has started using eye gaze technology and her cell phone to speak. “Somehow being reminded that some of God’s greatest works are in difficult circumstances has been life giving to me…if I can be an encouragement to others who are suffering in bigger or smaller ways…this hand I’ve been dealt can be holy,” Rebecca shared.

Joining the ALS Community

Through this devastating diagnosis, the Talley family has discovered a deep community in Lubbock, Texas. They were surprised to find so many others experiencing this disease in the area through the Lubbock ALS Support Group. Both Rebecca and Tim can connect with others who understand their experience living with ALS and as a caregiver.

Tim and Rebecca also find comfort in the virtual programs hosted by ALS Texas such as the Men’s Caregiver Group, Running on Empty, and Stress Less on Purpose. “There’s just a lot of camaraderie and a deep spiritual connection. Something deep happens when we come together. There’s the honesty, the tears, there’s laughter as well. Community helps process all of this. We can’t imagine doing this by ourselves,” Tim shared.

In November, Rebecca and Tim made the decision for Rebecca to begin hospice care. They are at peace knowing the community they have created will provide the love and support needed to navigate what’s ahead.

Rebecca's North Star

ALS may have taken Rebecca’s ability to run and speak on her own, but it hasn’t stolen her joy. She still smiles as she spends holidays with her children and grandchildren. Rebecca and Tim still joke, laugh, and cry together after all their years of marriage.

This experience continues to bless me.
Again, my identity is being stripped from me, this time by ALS.
I am having to learn a new way to communicate. My identity cannot be measured by how many languages I speak or how many miles I run. I can neither speak nor run.
Somehow the changes made in my life in East Africa have helped me let go more easily of the external identities that are not important. I am learning to rebuild myself in a new context around the identity most important.

Through it all, she has her North Star—her faith in God, the one thing ALS can’t take away. Guided by her faith, she knows her story will have a happy ending.

Texans with ALS like Rebecca Talley need your help. They need equipment, they need local resources and they need a cure! Your support provides these crucial resources and funds critical research for a cure.

Make a gift TODAY to show Texans with ALS they are not alone. Together, we can serve more Texans with ALS.

Finding Comfort in the Goodbyes: Toshene Fletcher’s Story

December 5, 2021 by Rhema Jones 2 Comments

Toshene Fletcher, Army veteran, wife, mother, grandmother, and friend, is a bright light. While she enjoys the quiet days of retirement and making memories with her loved ones, something else heavier weighs on her. Today, Toshene is preparing for her funeral.

Toshene was born in Brooklyn, New York and at 17-years-old, she decided to join the Army to earn money for college. At that time, a friend had joked with her saying she could not make it through basic training. Toshene wasn’t one to back down from a challenge, and with determination, she did just that and more.

What started off as a friendly wager led to a highly successful, 26-year long career in the United States Army. Toshene officially enlisted in the reserves in 1987. In 1989 she decided to go active-duty, with her first placement in Germany, a place that would change her life forever.

There, she met her husband who was also in the Army. She would also soon become best friends with her roommate. They’ve been inseparable ever since—even living a mile apart today. While stationed in Germany, Toshene’s Platoon Sergeant required all his squad to attend night school, which began her college education.

Discovering Her Potential

Wickedly smart and exceedingly determined, Toshene quickly rose through the enlisted ranks. She was even selected as Soldier of the Year and achieved the rank of Sergeant in three years. Shortly after her promotion to Sergeant, Toshene was the recipient of the Army’s competitive Green to Gold scholarship. This program selects enlisted Soldiers and pays for them to go to college.

She moved to Georgia to complete her undergraduate degree from Mercer University. But with Toshene’s determination and adventurous spirit, she concurrently completed Airborne School—jumping out of airplanes. Upon graduating, she was commissioned as a Signal Officer where she was assigned to an Aviation Battalion. There, she worked with the renowned Blackhawks, and was responsible for ensuring the ground personnel could communicate with air personnel.

Always searching for her next challenge, Toshene next applied for the Army’s Funded Legal Education Program. After being accepted into this prestigious program, she attended the University of South Carolina Law School. Afterwards, she returned to the Army as a JAG Officer (Judge Advocate Generals Corp). Toshene would remain in this position for the last 18 years of her military career.

“I loved every part of being in the military—even I think the parts that other people don’t like…it just never felt like work for me,” Toshene shared.

Impacting the Lives of Others

Toshene has always been driven to make a difference. As an officer, she enjoyed mentoring other soldiers. Her favorite assignment was as a defense attorney. She fought passionately on behalf of her clients and ensured they were treated with dignity and respect. Toshene smiled as she recalled the stories of several cases that remain close to her heart. Today, she is still close with many of those clients.

In 2018, Toshene retired from the military, but her drive didn’t stop there. Toshene was selected for her dream retirement job – teaching law at the U.S. Army Medical Center and School. Toshene loved teaching and delighted in her students’ discovery of how important knowledge of the law is to their career as Soldiers and medical professionals. She was thrilled to combine her legal experience and her leadership skills while educating Soldiers as they began their studies in Army medicine.

Facing New Hurdles

Unfortunately, Toshene’s dream was cut short less than a year later. In 2017, she started noticing unusual symptoms in her body. Her voice weakened and she couldn’t speak without getting winded. Toshene was unable to stand for long periods of time and couldn’t run or workout as much as she used to.

In February 2019, after sixteen months of grueling tests and endless appointments, Toshene visited the ALS Multidisciplinary Clinic at UT Health San Antonio. At that appointment, neurologist, Dr. Carlayne Jackson, gave her the grim diagnosis. Toshene had ALS. Since that diagnosis, so many things have changed.

Until a few years ago, Toshene was a very active person. She loved, hiking, rock climbing and running. She ran ten miles on a regular basis. However, by Christmas 2019, she could no longer run and by December 2020 she could no longer walk.

A Positive Outlook

Today, Toshene can no longer use her arms and utilizes a power wheelchair. What could normally seem like a restricting tool, she views as a blessing. “I found that the wheelchair really replaced the walking…it gave me the independence.” Toshene now relies on her husband and best friend to assist her with daily tasks. She was surprised at how shocking the loss of her arm and hand function would be:

“What was really the worst thing is losing my arms…I never thought about how much you use your arms and your hands.”

In the last year, it’s become increasingly harder for Toshene to breathe, causing her to use a ventilator. That doesn’t stop her from joyfully sharing her story with others. “I’m very thankful I still have my voice and I’m able to communicate,” she shared.

Support Along the Way

Although the last few years have been challenging, Toshene credits the ALS Texas with helping her and her family come to terms with the diagnosis. Between the ALS Texas staff and the multidisciplinary clinics, Toshene has access to the information she needs.

She is grateful for resources like the virtual Veterans group at ALS Texas as it’s given her the chance to connect with people she’d otherwise never meet. “I would say that’s what I really like about Dr. Jackson’s clinic and the people at the ALS Association of Texas. They really get to know you.”

Toshene is blessed by all the support she receives not only from ALS Texas but also her family and friends. Her best friend, who she’s known for almost 30 years, is by her side providing care. Her husband, whom she also met in the army, is holding her hand every step of the way. And their five children and three grandchildren bring Toshene joy on the toughest of days.

Comfort in the Goodbyes

Toshene is grateful that ALS doesn’t sneak up on you. She takes comfort knowing that she will be surrounded by the people she loves to say goodbye. While some dread the thought of making end of life plans, Toshene has found peace. “I have a therapist and she said, ‘Does it make you sad?’ No, it doesn’t…I’m a planner, and so it makes me happy.”

She doesn’t want a traditional funeral. Toshene plans to prepare letters for everyone who has touched her life. “They’ll get the acknowledgement that I passed and that they meant the world to me and they can remember me.” Her closest family and friends will hold a small ceremony together to honor Toshene’s memory.

Though her life will end sooner than most, Toshene feels happy with what she’s accomplished. “I don’t have a bucket list…I felt like my life was pretty full and I lived it to the fullest until I couldn’t,” she confidently shared. While Toshene still looks forward to more holidays with family, memories with friends, and travels to new places, she smiles knowing that things will be ready for her family when she is gone.

Toshene is just one of more than 1,300 Texans with ALS whose lives are cut short by this unforgiving disease. Today, there is no cure for ALS. Will you join the fight? They can’t wait. They need our help now!

Together, we can serve more Texans with ALS than ever before. Together, we can find a cure.

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Emory Bellard ALS Clinic Commemorates a Decade of Service to Texans with ALS

December 2, 2021 by Rhema Jones 1 Comment

In 2011, Dr. Jeffrey Tramonte stepped out of his comfort zone in the hopes of starting an ALS clinic in Round Rock. This year, the Emory Bellard ALS Clinic at Baylor Scott & White Health commemorates a decade of serving Texans with ALS.

Discovering the Impact of Multidisciplinary Care

Dr. Jeffrey Tramonte first encountered ALS more than 15 years ago during his training at the University of Virginia. There he joined a Clinical Neurophysiology Fellowship that provided heavy exposure to EMG’s and neuromuscular patients. There was an ALS clinic on site where the fellows actively participated. “That was my first exposure to a multidisciplinary ALS clinic,” Dr. Tramonte shared. “I really felt like we were making a difference in the care and the lives of those patients. That was sort of the initial impact on me personally.”

In 2005, he joined Baylor Scott & White Round Rock, just Scott & White at the time, as the Director of Neurology. Dr. Tramonte noted that while they didn’t have an ALS Clinic at the hospital, ALS patients visited occasionally. His team offered initial diagnoses and second opinions, but “for long-term care, we’d refer those patients out,” he shared. Knowing the benefit of multidisciplinary ALS clinics, Dr. Tramonte considered the possibility of creating one in Round Rock.

A Serendipitous Beginning

Dr. Tramonte recalls one fateful Friday afternoon when famous football coach, Emory Bellard, visited his lab for an EMG. Soon after that test, Bellard was officially diagnosed with ALS in February 2010. Dr. Tramonte knew the local family needed multidisciplinary care, but the nearest ALS clinic was hours away. He’d soon step out on a limb to change that.

“I did something I’ve never done before.” Dr. Tramonte asked the Bellard family if they wanted to sponsor an ALS clinic and name it in Emory’s honor. He was shocked when they said, ‘Yes!’ From there, the process moved rather quickly. “Within days he was getting me in touch with Coach Jackie Sherrill,” he shared. “He was integral in helping to rapidly put something together.”

In November 2010, the 12^th Man Kick Off Team Foundation honored Emory Bellard at their annual scholarship dinner. There, the Foundation and their guests raised $100,000 and announced the creation of a new ALS clinic in his honor. Dr. Tramonte noted that seeing all the people there who were impacted by Emory Bellard inspired him.

The donations came from other coaches that came after him, other football players and other lives that he touched…you can imagine the impact this head coach had.

Just months later, the Emory Bellard ALS Clinic at Baylor Scott & White Health opened. “It rapidly came together, it was really incredible,” Dr. Tramonte shared.

Celebrating a Decade of Milestones

This year marks 10 years since the clinic started. “I’m really proud of the work that we do and the team that we have, and the care and compassion we provide to not only the patients but to their family as well,” Dr. Tramonte noted.

As he reflected on this anniversary, he remembered their accomplishments from over the years. “I think our milestones are being an ALS Association Certified Clinic.” This network of clinics gives Texans with ALS better access to evidence-based multidisciplinary care.

He explained how the clinic also participates in the Northeast ALS Consortium (NEALS), contributing critical data for research. And at one time the clinic in Round Rock briefly hosted a clinical drug trial. “I’m optimistic about the future of ALS, and the research that’s being done, and the search for a cure,” Dr. Tramonte shared.

Most importantly, he joyfully commented how the clinic has improved its quality of care over the last decade. “We’ve gotten much better over the years at collecting the data we need to collect, providing the care as efficiently as possible, being sensitive to the needs of our patients and their families.”

The Life-Changing Impact of Multidisciplinary Care

Dr. Tramonte emphasized that when a patient’s care is not centralized to one location or team, it’s disjointed. There are problems with communication between providers, consistency of care, and other issues that are detrimental to the patient. “Getting your care under one roof, it’s one-stop shopping if you will…we’re making sure that we’re addressing all of their needs,” he noted.

Access to multidisciplinary care is scientifically proven to extend the lives of those living with ALS. For over 15 years, Dr. Tramonte himself has witnessed firsthand how it improves quality of life for his patients. He’s a firm advocate for this model and hopes to continue improving his clinic until one day, there is a cure for ALS.

Taking a step back from where this all started 10 years ago to where we are now, we’ve seen an incredible expansion of our clinic. There’s been a lot of enthusiasm for ALS. If we continue along that trajectory, you can only imagine that we will only continue to get better.

Watch Dr. Tramonte discuss more of the benefits of multidisciplinary ALS care in this exciting panel: ALS Clinical Care and the Future of Research!

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Friendswood High School Senior Inspires Community to Join the Fight to End ALS

November 5, 2021 by Rhema Jones Leave a Comment

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.

Guns Up for ALS Leads the Charge for ALS Awareness in Lubbock, Texas and Beyond

October 26, 2021 by Rhema Jones Leave a Comment

Lubbock, Texas is home to people from all walks of life, but for one small group, one thing connects them all. They have ALS. Now, brought together by this devastating disease, this group is on a mission to raise ALS awareness in their community.

The story of the Lubbock support group starts with one family and their unexpected experience with ALS. Patricia England and her family love the community of Lubbock, Texas. She explained that even though she’s moved from the town to be with her husband in Oklahoma, “Lubbock is my home very much so.”

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

“My mother was diagnosed in September 2018 at Texas Neurology with Dr. Heitzman,” Patricia shared. At the time, Patricia had moved to Oklahoma with her husband. But when Patricia’s sister broke both of her feet, she travelled down there to take care of her. Unfortunately, her sister passed in August 2019, and Patricia temporarily moved back to Lubbock to stay with her mom. “I felt like someone needed to be with her.”

Inspiration to Find Community

Jackie felt alone in her ALS experience and desperately wanted to find community. “I just want to meet other people that are dealing with this so I know I can live with it.” Patricia recalled her mom sharing one day.

Ok so what do we do? Patricia thought to herself. She was aware that there was a population of Texans with ALS in the area. Her mother had encountered several at her job as a nail tech, and they’d heard of more from a gentleman who attended her sister’s funeral.

“What if we do a support group? Let’s all get together and walk each other through this.” Patricia planned a first meeting for the new support group, but she needed a way to spread the word. She contacted a news reporter who conveniently was already preparing a story about a woman living with ALS in Lubbock. The reporter agreed to add an announcement regarding the new support group to the segment.

The day came and on November 12, 2019, the group met for the first time. Patricia was amazed at the turnout. “The first meeting blew my mind. People kept showing up and kept showing up.” Though they were aware of others in Lubbock with ALS, they had no clue just how many there were. And just like that, a medley of people with different ALS experiences came together to share with one another.

For the longest time, Jackie insisted she would never get a trach placed. A gentleman with ALS who also had a trach visited the meeting and conversed with her. Following that encounter, Jackie felt she could do it too. “Just seeing that hope, it was priceless,” Patricia shared. Among those in attendance was Amanda Stephens, a local speech language pathologist.

Providing Educational and Emotional Support

Amanda Stephens treated Jackie during her battle with ALS. Through that encounter, Amanda grew to find a passion for caring for those living with ALS in the area. “We really don’t have a lot of support here in Lubbock when it comes to professionals who are really experienced with ALS and who can provide comprehensive care,” she shared. She accompanied Jackie and Patricia to an ALS clinic in Dallas. There, she met Dr. Heitzman and his team.

Seeing all the things that were available there that we don’t have here has inspired me to try to bring things here and develop a team in Lubbock, Amanda shared.

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.

Since Patricia’s departure from Lubbock, Amanda has stepped up to lead the group as it continued to grow. It started not only as a place for emotional support, but also a place for educational support. “I would bring in different professionals to talk about different aspects of ALS.” Amanda shared that she also does many of the communication device evaluations and encourages the participants to bank their voice.

A Growing ALS Community

People with ALS from all different backgrounds come together for this group in Lubbock. They all have one thing in common—they have ALS or love someone with ALS. Under this common experience, they’ve created unbreakable bonds. Some of those group members graciously shared their ALS experience with us and why this community is so important.

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.

These are just a small handful of the many lives touched by this growing community in Lubbock. “By being in this support group, we are able to encourage each other. Because we may have been through it. We may not have been through that particular issue. But the greatest thing is that we all have one thing in common, and that is ALS,” Ken Olson shared. As the group continued to grow, they realized they could lead the fight against ALS in their community.

Leading the Charge for ALS Awareness

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.

There is a need to make awareness to the people of Lubbock and the south plains all around us…the only way we can get people aware is getting the word out there, and the Walk will help with that, Charlie Olson.

The Lubbock group joined the Walk in 2020 under the name Team Guns Up for ALS. They chose the name for ‘Guns Up,’ the slogan of Texas Tech. Many of the members have some affiliation with the university.

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.

The team hosted a BBQ cookoff in July to kick off their fundraising, raising $1,700 for their team. In October, the team has already passed their fundraising goal and is the top fundraising team for their local walk! They hope the funds they raise can aid in bringing awareness to the disease in Lubbock and beyond. “The more that we can bring awareness to ALS and everything involved in this is a good thing,” Amanda shared.

A Hope for Better Resources in Lubbock

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.”

Many of the Lubbock group members travel far and wide for multidisciplinary care. Some travel to Dallas, Houston, or San Antonio. Others travel as far as the Mayo Clinic in Scottsdale, Arizona—all wanting to see doctors equipped to handle their disease.

Those that travel to clinics in other cities find better support. However, “travel is not always an option for people,” Patricia noted. Many factors affect this like financial reasons or because of disease progression. “There’s not a neurologist equipped to handle ALS in Lubbock, Texas. And my hope is we can get somebody there that can understand and can help.”

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.

“There’s a temptation to look for cures on the internet. Having a doctor who is aware and can explain why these cures don’t work or not help can keep false hope from absorbing emotions and money,” Rebecca Talley shared.

The Importance of the ALS Community

The group also relies on each other to share wisdom and tips for their ALS experience. “It’s been so important for us,” Tim Talley shared. “There’s something deeply spiritual that happens in our group. We all remember those times that have been very raw. We’ve laughed, but we’ve also cried…It’s very real.”

Ken agreed as he encouraged others with ALS to get connected with a support group. These people can understand where you are and where your disease will progress. “It’s that kind of comradery that I think the value of the group is to each of us as individuals.”

Guns Up for ALS Puts a Face to the Disease

Team Guns Up for ALS hopes to put a face to the disease in Lubbock, Texas and beyond. “Living in the moment of this is what we can do right now—share our stories…raise the awareness. The little we can do in the moment,” Tim shared.

While the efforts of the team may not bring a cure in their lifetimes, they are thinking ahead to those who will follow them. “Unfortunately, we are losing people to this horrendous disease, but we are also gaining new people every meeting,” Charlie noted. All the members of the Lubbock support group know that the moments they spend fighting this disease bring us one step closer to a world without ALS.

Join us and Team Guns Up for ALS on Saturday, October 30 for the Walk to Defeat ALS! You can register in your city, then walk wherever you want. When you support the Texas Walk, you support the fight to end this disease and bring better resources to Texans with ALS.

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