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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.

Filed Under: Fundraising, Stories Tagged With: als community, fundraising

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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Filed Under: Stories, Walk to Defeat ALS Tagged With: als community, walk to defeat als, why we walk

Team Toujours Provence Joins the Walk to Support Texans with ALS

October 19, 2021 by Katie Gilroy Leave a Comment

Jeanine has always been a vibrant person, who is full of personality and loves to socialize. The last thing her daughter, Claire, had ever expected was for her mother to develop ALS, but when Jeanine began having difficulty speaking in 2019, their family began seeking answers.

The Onset of ALS

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.

“They ruled out a stroke, did brain MRIs, and started going through the process of elimination.” Claire said about the process of getting a diagnosis, “This was between September and November of 2019, and over this time period, her speech was getting slower, more slurred, and harder to understand. They thought she might have something dementia related.”

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.

After receiving the diagnosis, the family got in contact with the ALS Association of Texas for assistance and resources.

“At that point, it was still so early in the disease’s progression that you still have this false hope that it’s going to be fine and nothing is going to progress. Bulbar ALS has a shorter life expectancy than the more typical ALS, so typically it’s a 2-3 year life expectancy.  At the time when she was diagnosed, she could still do so many things and had no physical or gross motor impairments, so despite that prognosis, we thought she would be fine.” Claire said about the period after her mother was diagnosed.

Team Toujours Provence Joins the Walk to Defeat 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.

“We need something to do. We are there as much as we can be, but I felt like we need to help raise awareness and raise money for research and a cure for ALS. I’ve been reading about medicine that is hopefully on the cusp of helping future ALS patients, so I feel like we need to do something for the community to contribute to those efforts,” she said.

The family picked the team name Toujours Provence to honor Jeanine’s favorite place and things. Jeanine moved to America from France in 1969, and has a love of lavender fields, wine, cheese, and all things French. The name translates to ‘always Provence’ because Jeanine’s heart will always be in her beautiful homeland.

The whole family has rallied with Jeanine and gotten involved with the walk; Claire’s 10-year old daughter even wanted to make special t-shirts for the team! Claire is excited to be part of the community during walk and be with other families who are also dealing with ALS.

“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.

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Filed Under: Stories, Walk to Defeat ALS

A Culture of Hope & Positivity: UT Health San Antonio Celebrates 25 Years Serving the ALS Community

October 14, 2021 by Rhema Jones Leave a Comment

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 Humble Beginning

Flash back to the 80s, where in San Antonio Mary Klenke connected with the ALS Association of America. They gave her the names of 7 people living with ALS in her local area. She started a small support group that only grew over time.

Mary soon contacted Dr. Allen Gruber, the neurologist at UT Health Science Center in San Antonio. She explained that she was volunteering with those living with ALS and offered to assist with any new patients. Dr. Gruber later moved on and Dr. Richard Barohn took his place. He would call Mary each time he made a new diagnosis.

Concurrently, Dr. Jackson had just finished her residency was building her experience with ALS as a disease. “Dr. Barohn was my mentor and he had started to do clinical trials in ALS during my fellowship in 1991.” Dr. Barohn soon took another opportunity at UT Southwestern in Dallas, but not before he introduced Mary to Dr. Jackson.

His departure left Dr. Jackson to serve as the principal investigator in the ALS trial using ciliary neurotropic growth factor for ALS patients. “It was through that trial that I really got connected with the ALS community and the ALS patients and really developed a passion to care for them specifically.”

The further Dr. Jackson and her team moved through the trial, the more they observed the benefits of multidisciplinary care.

Pursing the Multidisciplinary Care Model

During the clinical trial, Dr. Jackson observed her patients once a month, in addition to a physical therapist performing evaluations. “We saw that that kind of multidisciplinary team was just so much more effective in addressing patient issues and anticipating their needs.”

This model of care offered a different approach from Dr. Jackson’s usual routine. She would visit her ALS patients by herself once every three months, the standard of care at the time.

Dr. Jackson reached out to Mary again sometime around 1993. Mary’s group had officially joined the national organization as a local chapter. The ALS Association was also working on a multidisciplinary model of care. There were very few clinics in the United States, and even fewer in Texas.

Dr. Jackson shared that she wanted to start a clinic and hoped the ALS Association would sponsor it. At that point, the clinic at UT Health San Antonio worked to staff the full complement of team members. They continued to build connections with the local Texas Chapter and connect with the vision of the national organization. “We applied and we were formally certified in 1996,” Dr. Jackson said.

“The clinic is the best thing we have ever done for ALS patients because they get that professional care and receive hope. Even though we don’t have a cure yet, we can give our love, our care, our expertise, and be there for them,” Mary Klenke.

Expanding the Multidisciplinary Model in Texas

Twenty years after the creation of the ALS Clinic at UT Health San Antonio, Dr. Jackson found an opportunity to help expand multidisciplinary care in Texas. Her team found that many of their ALS patients traveled as much as 6 hours to make it to clinic. “Not only was it a huge time commitment, but also a financial burden,” Dr. Jackson noted. At the same time, the clinic noticed problems with access because slots filled up so quickly in the schedule.

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.

Dr. Jackson and members of her team traveled to the Rio Grande Valley to mentor this new clinic team. She and the San Antonio team even travelled to the hospital for the clinic’s grand opening in October 2017. “Those patients have really benefited,” she shared.

Milestones Along the Clinic Journey

Over the years, Dr. Jackson observed many milestones and accomplishments at the clinic at UT Health San Antonio. “I think one of the things I’m really proud of is that we’ve always had access to clinical trials.” She elaborated that these opportunities not only included clinical drug trials, but also studies to help understand ALS as a disease. These opportunities include blood donations for biomarker studies, including their information in data repositories, and more.

“Patients hopefully feel more engaged and know we’re working hard to solve the problem and not just to take care of them while they’re there.”

Dr. Jackson shared that the team has incorporated neuropsychology into the clinic team. “Now all patients receive baseline neuropsych testing to determine if there is any component of frontotemporal dementia.” This knowledge not only helps the clinic team administer proper care, but it also benefits the caregiver. Being able to address, cope, and care for behavioral changes is crucial for proper home care.

“We have counseling services now that we never had access to,” she shared. This brings another layer of full body and mind care at the multidisciplinary clinic. Over 25 years, these are just a few of the advancements Dr. Jackson’s team have made in the clinic.

Then and Now: Advancements to Care

When asked how standards of care have improved over the last 25 years, several things came to Dr. Jackson’s mind. “The biggest thing has been the respiratory intervention and our partnership with RQS.” Their ability to perform Pulmonary Function Tests at home, educate caregivers, and troubleshoot equipment is an amazing feat. She mentioned that this was especially beneficial during the pandemic when many clinics were unable to see patients in person.

“The other real breakthrough since COVID has been our use of telemedicine,” Dr. Jackson shared. Telemedicine breaks down barriers to access by allowing patients to connect with their care team from miles away. Dr. Jackson noted how some of the patients in the Rio Grande Valley still connect with their team via telemedicine.

If patients have urgent issues, she can join a video call with them instead of waiting for the clinic appointment. “Particularly for patients with mobility issues or patients that rely on tracheostomy ventilation, we can now provide that same level of care virtually.” She hopes to continue this practice in the future.

Community and physician partnerships also grew tremendously for Dr. Jackson’s clinic.

“We’ve been able to partner with gastroenterologists and pulmonologists, and people outside of that core clinic team…We’ve really been able to strengthen our relationships and connections with community resources. And a lot of that has to do with the ALS Association folks knocking on doors.”

These connections are lifechanging for the Texans with ALS in South Texas. “It’s really taken a long time to establish those relationships,” Dr. Jackson shared. “But I think once those people are hooked, they continue to provide amazing care and continuity of care.”

Then And Now: Advancements to ALS Research

Dr. Jackson and her team are dedicated to not only serving Texans with ALS, but also searching for a cure. “We’ve come a long way in terms of trying to make clinical trials more appealing to patients.”

She discussed how the HEALEY ALS Platform Trial is a testament to these advancements. UT Health San Antonio houses one of three HEALEY ALS Platform trials in Texas. “It’s a really unique trial design in the sense that we’re now studying five different compounds at the same time and only one placebo group.”

In the past, those living with ALS would apply for clinical trials. If accepted, they had a 50/50 chance of getting a drug. And there was no access to the treatments post trial. The HEALEY ALS Platform Trial changes everything. “Patients have a 75% chance of getting an active drug throughout the trials. And they are all guaranteed access to the drug in an open label extension after the trial is over.”

Dr. Jackson estimates that 25 years ago, only 5% of their patients were involved in research. Today, she estimates that at least half of their patients are participating in some type of research now. This includes not only drug testing, but also donating blood and their medical data. She notes that many of these opportunities were made possible through the advocacy efforts of ALS Texas.

A Culture of Hope & Positivity

With all the advancements in care and research, one thing remains constant at this clinic, a dedicated team. Dr. Jackson described a team that views the clinic as a ministry and not just a job. The team at UT Health San Antonio views itself as a family, and that sentiment extends to the patients.

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.

Like Dr. Jackson, many of the team members have been at the clinic for years and decades. When we can say decades of experience with ALS, that speaks volumes. Many patients have experiences where they interact with a local neurologist or doctor who has never seen an ALS patient before.

The care services team at ALS Texas frequently hear glowing reviews of the clinic. They note that Dr. Jackson has the perfect combination of knowledge, confidence, and an inviting bedside manner. When those living with ALS come to the clinic, they are not just seen as patients. The team is focused on their whole health and they feel that we truly care about them as a person. “That is certainly our goal,” Dr. Jackson shared joyfully.

What Will the Future Hold?

We asked Dr. Jackson what makes her excited for the future of this clinic. Immediately, shared, “My vision would be to try to expand our clinic to more than one neurologist so we can increase and improve our access.” She eventually hopes to develop another full clinic team and offer a full day clinic to serve more patients.

Dr. Jackson also wants to equip ALS caregivers to care for their loved ones at home. Her vision includes programs that would teach caregivers how to transfer, use a PEG, and more. She excitedly shared how the clinic has improved its psychiatry options over the last two years. “I think to have a faculty mental health provider would be a huge asset and something I would aspire to do.”

Today, the clinic serves an average of 250 Texans living with ALS each year. 50 – 60 of those patients are new every year with the rest being returning. “Because of the durability of the team and the experience of the team we’ve really been able to strengthen and anchor ourselves and the resources available in South Texas and Central Texas.”

Regardless of what the future holds for the ALS clinic at UT Health San Antonio, Dr. Jackson and her team are eager to serve our community for many more years to come.

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Filed Under: Stories Tagged With: als clinics, clinics

Family Bonds: How team BobKat Came Together

October 1, 2021 by Katie Gilroy 1 Comment

For Libby Castillo, her older sister, Kathy – or Kat, was always the one taking charge. Even though Kat was 11 years older, she and Libby were close throughout their lives. Kat had four children, one girl and three boys, who are all adults now. Even though Kat passed in April of 2021, her family continues to Walk to Defeat ALS in her memory.

The Diagnosis Process

The first sign of ALS that Kat experienced was numbness in her left hand. She soon began to lose functionality in the hand, so she and her husband began meeting with doctors to determine what was going on. After multiple visits, eventually they landed on a diagnosis of ALS. Kat gathered her family together to share the news of her diagnosis on National Siblings Day. Initially, some family members had no idea what ALS was. One of Kat’s sons immediately began doing research.

“He and I were the ones that sat down together and got on our phones immediately and started looking it up… we saw the lifespan of people who have ALS and knew this was not a good thing,” Libby said.

After Kathy had broken the news to her family, they got connected with the ALS Association Texas Chapter  and began going to support groups and clinics together.

“There’s this resource out there of these support groups… they are an excellent resource for people who are going through this, especially for family members. We need that connection with other people to work through our emotions together,” Libby said about becoming involved in the ALS community, adding that the support groups were especially helpful for her mother who had to watch her daughter go through this disease. Though Libby initially went to the groups to support her mother, she soon found herself benefitting from the groups as well, “It was interesting to meet other people and let people know that we understood what they were going through as well.”

Joining the Walk

Kat had always been a go-getter, and that didn’t stop even when she was diagnosed with ALS.

“Kat would go after what she wanted; if someone didn’t give it to her, she’d find a way to get it herself. When she was diagnosed, she heard about the Walk, so when she was still able to walk, she gathered everybody up – her friends and our family—and we did our first walk at Woodlawn Lake in San Antonio.”

The team name, Team BobKat, is a combination of Kat’s name, and her husband’s name, Bob. They have been active in every walk since Kat was diagnosed and hope to continue carrying the torch in honor of Kat and to help others who are dealing with their own ALS diagnosis. Libby has taken on the role of team captain since her sister’s passing and hopes to make the walk as successful as possible in Kat’s memory.

“We are a direct example of how these funds help people. We were able to use the resources that the ALS Association provided,” Libby said, “We walk because we as a collective want to raise money for this association because we know the good that can come out of the funds that are raised.”

Helping Others Along the Way

Libby knows how hard it can be to deal with the news when a loved one is diagnosed with ALS. She urges others to be empathetic and gracious with both themselves and their loved ones and encourages people to reach out and ask for help.

“For the people with ALS and the caregivers – take the help… there’s help not only from friends and family that want to give it, but also from the Association as well.”

Even when Kat lost her ability to speak, Libby was always amazed with her sister’s tenacity. Kat continued to organize her family’s walk and even planned an entire wedding vow renewal ceremony for her and her husband using her eye-gaze machine.

“Despite everything that happened to her, I’m just amazed how strong she was mentally and emotionally. She has this big family… she had a very strong mind and was open to accepting the help and using the resources that were given to her to live her best life despite the diagnosis.”

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Filed Under: Stories, Walk to Defeat ALS Tagged With: ALS Hero, als stories, walk to defeat als, why we walk

Cowtown Affair Hero: Chuck Pettigrew

August 31, 2021 by Katie Gilroy Leave a Comment

Chuck has been married to his wife for 46 years, and has 3 grown sons, 7 grandchildren, and 1 great grandchild. A self-proclaimed cowboy, Chuck has a love of poker and even hosted weekly poker nights with his friends and family before the pandemic hit. He had also been involved with different sports and even has a 2nd degree black belt in American Karate.

Diagnosis

Chuck has been an athlete for most of his adult life, so when he started noticing weakness in his legs, he simply thought he was out of shape and needed to get back into training. In January 2013, Chuck visited his primary care doctor who noticed “abnormal weakness” in Chuck’s arms and legs. The doctor sent Chuck for an EMG and nerve conductive study, and the results lead to him suggesting Chuck see a neurologist. After more studies, Chuck was referred to Dr. Daragh Heitzman at Texas Neurology who diagnosed him with ALS in July of 2013.

After being diagnosed, Chuck began visiting Dr. Heitzman’s clinic every 3 months; it was during one of these clinic visits that he was connected with the ALS Association of Texas.

“The biggest contribution for me has been that it provides a connection with other patients and resources,” Chuck said, “I feel like the ALS Association unites patients and their families and caregivers and provides a unity and support that – to me – is really essential to living with ALS on a day to day basis.”

Keeping the Faith

Chuck’s faith helps him keep going through his ALS journey, but it hasn’t always been easy. Chuck’s son was diagnosed with muscular dystrophy, a disease which leads to muscular degeneration.

“I had about 11 years of my life where I was just mad at God because my son who had muscular dystrophy had a daughter, and she was diagnosed with muscular dystrophy too, and I knew what that meant for her and for their family, and I just got angry,” he says about that difficult time in his life. His views changed though when a friend sent him a book after his diagnosis. Chuck explained that in the book, even though God’s servant, Job, faces many hardships and evils, he never loses his faith. “Once I got diagnosed and I read that book, I made a conscious decision that I wanted to use my life with ALS as an example of hope and faith.”

Focusing on the Positives

Chuck keeps a positive attitude about his life with ALS and focuses on the things he can still enjoy even with ALS. Even though he can’t participate in many of the activities he enjoyed before his diagnosis, Chuck says that he has still been able to keep active for most of the 8 years that he has been diagnosed with ALS. Even with the weakness in his arms and legs progressing more in the last few years, Chuck is still glad that he can enjoy different things in his life.

“I try to keep my focus not on the things I cannot do, but my focus is on the things that I can do,” he says, “My physical limitations have continued to increase especially over the last three years, but I can still drive. I use my wheelchair 98% of the time, but if I want to, I can still get out of my wheelchair and walk.

My advice to ALS patients would be focus on the things you can do; don’t focus on the things you can’t do.”

He wants to use his diagnosis as a way to lift others and help them with their own journeys, even as his physical abilities diminish.

“I would encourage other patients – don’t let ALS define you. I would encourage them to be defined by the courage and the hope it takes to live with ALS on a daily basis.”

Filed Under: ALS Hero, Stories

How Friends of Rupesh Are Fighting Back Against ALS

August 24, 2021 by Rhema Jones Leave a Comment

Siobhan Kotiya describes her husband Rupesh as a people person who is very outgoing. His personality aided him in making many great friends over the course of his lifetime. Now that he’s living with ALS, the Kotiya family and Friends of Rupesh are incredible advocates for Texans living with ALS.

An Unexpected Diagnosis

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.

Rupesh first noticed symptoms in his shoulders in 2013. He could not make his normal shots in basketball and it became difficult to do simple tasks. Concerned that something was wrong, Siobhan and Rupesh started to meet with therapists and specialists. Through a gradual process of elimination and second opinions, they unfortunately received an official ALS diagnosis in October 2014.

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.

“It was that decision around fight or flight, and we just decided we were going to fight it. We were going to try and do everything possible,” Siobhan shared.

Overcoming the Challenges of ALS

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.

Daily tasks became difficult for Rupesh as his ALS progressed, such as showering and getting dressed. Their family searched for assistive options and they soon connected with the ALS Association of Texas. Rupesh was provided a shower chair from the Equipment Loan Program. From there, the Kotiya family continued to grow their relationship with the chapter and now they are passionate about supporting the ALS Texas Mission.

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.

Friends of Rupesh and the Fight Against ALS

Siobhan describes her husband Rupesh as a people person who is very outgoing. Throughout his life, he has made many friends who are now eager to support his ALS journey.

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.

“This provided us with the opportunity to support an organization that is not just focused on funding research and finding a cure but also supporting families that are going through it… They provide future hope as well as the day to day support that you need.” Siobhan shared.

Last year, during the pandemic, their goal was to raise only $750 – $1,000. However, by the end of the Walk, they had raised over $14,000 to support the ALS Texas mission. “Everyone just kept giving and giving!” Siobhan shared.

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.

These are just a few of the ways that the Kotiya family and Friends of Rupesh have rallied against the fight against ALS. In the last several years, they have raised over $35,000 to support the ALS Texas mission. Their story is a true testament to the power of our ALS community. Those living with ALS and their loved ones are determined to end this disease, and ALS Texas is here to lead the charge.

Why Should You Support ALS Texas?

When asked why others should join the Walk to Defeat ALS, Siobhan answered with confidence. “We are a family that’s going through this every single day and dealing with the challenges that come with it.” She continued, “Having that ongoing support that makes a difference to your life is so important as opposed to just waiting for a cure that unfortunately many won’t see in their lifetime.”

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.

When you join the Walk to Defeat ALS, you not only support research for a cure, but also crucial local care programs. Most importantly, it gives us the opportunity to honor and celebrate Texans with ALS and their families.

Although everyone’s journey is different, we all have one common goal and that it is to rid the world of this horrid disease and to make those who are diagnosed as happy and comfortable as possible.

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!

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Donate to Support the ALS Texas Mission

Filed Under: ALS Hero, Stories, Walk to Defeat ALS Tagged With: ALS Hero, als stories, walk to defeat als

The Rise of Male Caregivers

August 2, 2021 by Tonya Hitschmann Leave a Comment

In March of last year, ALS Texas launched a caregiver group just for women, Brewed Awakenings.  This group has seen tremendous growth in the last year, and so many ladies throughout the state have connected in both a unique and shared journey to lift each other up, share caregiving resources, and offer encouragement and support in a life experience that most will never truly understand.

Fritz Weiss

Now, in 2021, we are excited to finally launch our Men’s Caregiver Group, co-facilitated by husband, father, caregiver, and business leader, Fritz Weiss. Our mission is to support every member of the family, in every way that we possibly can, and this new connection group will allow us to support the rise of male caregivers.

Many may imagine a typical family caregiver to be an older woman caring for a loved one and delivering supportive services without pay. Though men may not be typically seen as caregivers today, the truth is that 40 percent of family caregivers are male.

Around 16 million men—husbands, sons, uncles, brothers, and close friends—are caregiving for a loved one, and that number is continuing to grow. (AARP)

Fritz Weiss is married to Laura Weiss, whom he met in a Freshman Chemistry Lab class at Texas A&M in 1983. They married in 1992 and have three wonderful children.

Laura began experiencing symptoms in early 2017 and was diagnosed with Bulbar Onset ALS in June of 2017. Laura and Fritz are both native Houstonians and were still living in Houston at the time.  Shortly after the diagnosis, they moved to the Lake Travis area outside Austin to be closer to family and to enjoy the lake.

As caregivers, men often have smaller emotional support networks and are less likely to seek out programs that could increase their caregiving capabilities and help them cope with this major life change.  Additionally, the insight below regarding male caregivers was also revealed in a recent AARP survey:

  • 66% of men work 40 hours a week. 62% of this group had to make special arrangements for work. 48% were tardy, left early, or took time off to handle caregiving duties. 15% had to take a leave of absence or work part-time.
  • 37% refrained from telling their employer about their caregiving responsibilities. For millennials, that rose to 45%.

According to the Journal of Men’s Studies, “male family caregivers are misperceived as performing only financial and transportation assistance, while women take care of hands-on needs such as dressing, bathing, and cooking.” However, we know that male caregivers do much more than just that.

Last year, during National Family Caregivers Month, we introduced you to husband and caregiver, Tyler Wood. When asked his biggest struggle as a male caregiver, Tyler replied, “Thinking like a woman-you have to somewhat get in a woman’s head as a male caregiver and that’s dang near impossible for us guys! It’s the mental game that you have to play with yourself. As men, we don’t think about that stuff, but the ladies, they still want to look pretty; they still want to feel pretty.  Feeling pretty for a woman is huge.”  And the biggest challenge within this? Sharing in his genuine approach that always contains some humor and laughter, Tyler quickly offers, “I do not like touching feet.”  He adds with a more serious tone,

Clipping her toenails, painting her toes…you know doing all that stuff- you really start to think about what attracted you to your spouse. It’s almost like you gotta think about being the opposite sex, and what they think is important and make that important to yourself as well. When you take the time and make her feel pretty, it’s amazing the glow that comes out of her, and the more zeal for life she has, despite the situation she’s in.

Fritz Weiss has been the primary caregiver for Laura since her diagnosis.  As ALS has progressed, Laura’s caregiving needs have increased, and to support those needs, some extremely difficult “executive decisions” have to be made along the way.   In helping to co-facilitate and lead the ALS Texas Men’s Caregiver Group, Fritz will bring his personal experience in juggling the hands-on daily skills and emotional support required of a caregiver, as well as the balancing act of maintaining self-care and continuing to use his personal gifts in a life lived on Purpose.

Fritz earned a degree in Computer Science from Texas A&M in 1987, and had a long, successful career as an Information Technology professional. In 2013, after Fritz retired from the corporate world, he and Laura bought a Salons by JC franchise and began developing and operating salon suite locations.

Fritz has always had a strong interest in real estate and has owned residential and commercial investment properties in Texas and Louisiana.  His experience with Salons by JC gave him further exposure to the world of commercial real estate. During the pandemic and while being a caregiver, Fritz got his Texas real estate agent license and has started working with a local broker to grow a new career in real estate. Also, during this time Fritz earned a US Coast Guard captain’s license. It is amazing what you can do online now!

Before ALS entered his family’s life, Fritz enjoyed spending time on Lake Travis with family and friends, and saltwater fishing on the Texas Gulf Coast and other locations around the globe. He hopes to be able to return to these hobbies someday.

If you are a male caregiver in Texas, you are not alone. We invite you to join us every second Monday of the month for this virtual group.  If you know one or more of the 16 million male caregivers in the nation, invite them to connect and engage with our ALS Texas community, as we support this rising group of caregivers.

Register for the Men's Caregiver Group

Filed Under: Caregivers and Family, Stories Tagged With: als stories, caregivers

The ALS Clinic at Texas Neurology

July 27, 2021 by Catherine Nodurft 2 Comments

Dr. Daragh Heitzman

Founded by Dr. Daragh Heitzman in 2000, the ALS Clinic at Texas Neurology has served the ALS community for the past 20 years.

After his neurology residency, Dr. Heitzman went to the Cleveland Clinic, where half of his patients were people with ALS. When he returned to Dallas in the mid-nineties to open his private practice, he began to realize that he missed caring for ALS patients. He saw a need for multidisciplinary care in North Texas and for clinical trials to drive research advancements for ALS treatments. After encouragement from other colleagues across the country, he decided to open the ALS Clinic at Texas Neurology in Dallas.

“If You Build It, They Will Come”

At first, the clinics were held every three months, with six patients at each clinic. The number of patients grew exponentially over the years. Today, clinics are held twice a month, serving between 30 – 35 patients per month. Dr. Heitzman estimates that they currently care for 220 – 230 people living with ALS.

“We know patients live longer when they attend clinic. It also saves them from having to visit multiple healthcare providers – physical therapy, speech therapy, occupational, respiratory therapy. If you can consolidate that, it makes it easier on the patients and the caregivers. Most healthcare providers, including neurologists, have zero experience with ALS. Coming to a clinic allows you to get it all-in-one, and to get help from people who are experienced with ALS. “

Telemedicine: Breaking Down Barriers to Access

Telemedicine isn’t a new concept, but prior to the COVID-19 pandemic, healthcare providers struggled with implementing telemedicine. There were virtual platform restrictions and the fact that insurance wouldn’t reimburse for virtual visits. When the lockdown started, most ALS clinics across the state closed for several months for the safety of their patients. But the ALS community, the ALS Association, the American Academy of Neurology, and other organizations advocated for an expansion on telemedicine, resulting in new guidelines that removed these barriers and enabled a widespread adoption. The ALS Clinic at Texas Neurology began to offer telemedicine to patients, and while some preferred to wait until they could meet in-person, patients from far away (such as Lubbock or Amarillo) and those who were in a more advanced stage of the disease jumped at the opportunity.

Dr. Heitzman and his team have seen the advantage of providing a telemedicine option to patients long-term. “We need to see them initially to make the diagnosis, but thereafter, with the exception of doing PFT’s (pulmonary function tests), we can do this all through telemedicine,” Dr. Heitzman states. “But I think we can get to the point where we will be able eventually be able to send them a kit that they can do at home and then send to the pulmonologist. It just makes it a lot easier on the patient.”

There are still challenges to overcome with telemedicine, such as lack of access to internet for people in under-resourced communities, and the fact that the current guidelines enabling broader use of telemedicine are currently temporary. Along with partners such as the ALS Clinic at Texas Neurology, we are working to overcome these challenges and advocate for Texans with ALS to continue to have access to telemedicine to continue the crucial care they need to improve their quality of life.

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Filed Under: Stories Tagged With: als clinics

Staying Connected on the ALS Journey: Norman and Dee Jones’ Story

June 14, 2021 by Rhema Jones Leave a Comment

Faith has guided Norman Jones his whole life. Even in the face of an uncertain ALS journey, it hasn’t wavered. 

Norman Jones described the beginning of his ALS journey as an emotional rollercoaster. He had gone from the highs of retirement and having more time to spend with his family, to the lows of a devastating ALS diagnosis. “But my faith has kept me strong,” Norman shared. “My wife, my kids, my friends, family, and church…they kept me strong.”

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.

Two years later, he noticed symptoms such as his left foot dragging while he walked and slurred speech. Through a series of tests and doctor’s appointments, Norman was formally diagnosed with ALS in May 2018.

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.

Norman is still involved with his church, teaching a Wednesday Bible study, preaching occasionally, and even sharing weekly email devotions with his congregation. “Even though I have my limitations, I don’t let that stop me from getting involved.”

Dee and Norman connected with the ALS Association after visiting with Dr. Jackson at UT Health in San Antonio. Just two years into their ALS journey, Norman and Dee had to also adjust to the challenges of the COVID-19 pandemic, as In-person clinics and support groups came to a halt for the safety of Texans with ALS and their families.

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.

Hearing the stories of other ALS families and swapping notes has been incredibly helpful to Dee as a caregiver. “For me, it’s a lifeline,” Dee shared. She recalled that many times, she has heard experiences from other wives and caregivers that are like her own. “Some of us are going through the same issues and same journey. I try to embrace it.”

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.

In the meantime, Norman encourages others on the ALS journey to stay connected to the community around them. “Reach out and connect with family, friends, and organizations, because you get your strength and support from others.”

Filed Under: ALS Hero, Inspiring PALS, Stories Tagged With: als stories, support groups, veterans with ALS

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