ALS Texas

Because of You: 2021 in Review

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This year, our ALS community continued to work together to serve Texans with ALS and their families. It’s been a year of constant change, but your commitment never wavered. And because of you, we are serving more Texans with ALS and their families than ever before.

Because of you, family caregivers are receiving the support and resources they need. Youth are sharing their voices and finding strength through shared experiences. ALS clinics are delivering specialized care and conducting clinical trials. And promising treatments are on the horizon.

Because of you, our Texas Chapter Events continued to raise crucial funds through virtual and in-person fundraising events. And our Walk to Defeat ALS brought Texans together, as we gathered in Dallas, San Antonio, and Houston, and across the state.

Here’s an update on how your support has impacted Texans with ALS and their families so far this year.

Local Care

Our team works to provide critical resources and support to people with ALS and their families. Your support enabled us to continue this work, helping Texans with ALS navigate the disease.

From February-October 2021:

1,131 Texans with ALS are Currently Registered with Our Chapter
(Compare to 1,004 at this time in 2020, and 929 at this time in 2019)

275 New Texans with ALS
(Compare to 278 new patients at this time in 2020, and 169 at this time in 2019)

1,320 Total Texans with ALS Served
(Compare to 1,272 in all of 2020, and 1,207 in all of 2019)

1,400+ Family Caregivers, Youth and Children Served

Learn more about our local care programs

ALS Multidisciplinary Clinics

Since the start of the pandemic, we’ve worked closely with our clinic partners to help keep our community safe and ensure our presence as a resource for Texans with ALS and their families. Each clinic has modified their operations to serve their community, offering in-person and virtual options where appropriate.

Multidisciplinary clinics are a crucial part of caring for Texans with ALS. Dr. Daragh Heitzman, Clinic Director at Texas Neurology, states, “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.“

ALS Texas partners with 11 ALS multidisciplinary clinics across the State of Texas. Six of these clinics are also involved in research:

*Sites hosting clinical trials

View a full list of our clinics

Local Research

Through clinical trials and ground-breaking studies, innovative research to find treatments and a cure for ALS is happening right here in Texas. Here are two highlights of how we’re supporting research locally so that one day, we can create a world without ALS.

HEALEY ALS Platform Trial

  • Enables researchers to study multiple drug treatments at once, accelerating search for treatments and a cure
  • 54 test sites across the country, three test sites in Texas (Texas Neurology, Houston Methodist, UT Health in San Antonio)
  • A total of $3 million funded by the ALS Association
  • Texas Neurology was one of the first five initial sites, and Dr. Daragh Heitzman at Texas Neurology was recently appointed to the HEALEY ALS Platform Trial Executive Committee, the first physician investigator to join an elite group of scientists.

Read more about the HEALEY ALS platform trial

Treg Study at Houston Methodist

  • Promising research study into cell therapy that could slow progression of ALS
  • Currently in phase 2 trials
  • A total of $3.5 million funded by the ALS Association, MDA, and ALS Finding a Cure
  • Led by Dr. Stanley Appel at Houston Methodist

Read more about the TREG study

Staying Connected

Gathering in-person has not been an option for our ALS community since people with ALS are high-risk. Last year, we moved to a virtual support group model to keep this crucial community connection. Over the past year, we’ve seen an even greater need for people to connect and have added more support groups to address the needs of caregivers, youth, and children.

Once it is safe for our community some groups will move to a hybrid in-person AND virtual model. However, some groups will remain completely virtual, as it allows people from the Panhandle to the Valley to connect from afar.

From February-October 2021:

  • 805 People Attended
  • 116 Virtual Support Groups

Here’s a full list of our current and future groups:

  • Patient & Family Groups
    • Austin Connection Group
    • Corpus Christi Connection Group
    • North Texas Connection Group
    • Houston Connection Group
    • Rio Grande Valley Connection Group
    • San Antonio Connection Group
  • Caregiver Groups
    • Spanish-Speaking Caregiver Group (New in 2021)
    • Men’s Caregiver Group (New in 2021)
    • Brewed Awakenings – Women’s Caregiver Group
    • Austin Caregiver Group
    • San Antonio Caregiver Group
    • Corpus Christi Caregiver Group
  • Youth & Children Groups
    • Age 8-13 Support Group (New in 2021)
    • Young Adult Peer Support Group (New in 2021)
  • Specialty Groups
    • ALS & FTD Support Group (New in 2021)
    • Veteran’s Support Group
    • Bereavement Support Group

You can view a full schedule of monthly support group meetings, or register for an upcoming virtual group here.

Read more about the growth of this program

Tools for Navigating ALS & Community Programs

This year, we continued to launch new initiatives to support Texans with ALS and their families to help them navigate the disease and provide additional support to family caregivers. Here’s a look at the workshops, presentations, and programs we’ve delivered to our community this year.

From February-October 2021:

  • 427 people
  • Attended 25 virtual workshops, presentations and programs

Here’s a list of the virtual programs we offered in 2021:

View a full list of upcoming virtual events and presentations

Looking to the Future

Because of you, more Texans living with ALS are receiving care and support from ALS Texas than ever before, and our numbers are continuing to climb. Today, there is still no cure for ALS and there’s still more work to be done. We can’t do it without YOU! Together we can continue to serve MORE Texans with ALS than ever before. Together we can create a world without ALS.

Get Involved

Interested in helping us create a world without ALS?

Donate to Support the ALS Texas Mission

Start a Fundraiser

A Note from Tonya: Caregiving as a Team

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November is National Family Caregivers month. While we are focused on supporting every member of our ALS Texas family throughout the year, this month allows us an opportunity to host some extra special events for family members, and to remind everyone that caregiving should be a team approach, with your loved one who is living with ALS leading the charge.

PRE-GAME PREP: It is important to ask your loved one HOW they want to live, and if you can agree on an overarching goal, your strategy along the way will be a little easier to figure out. Like any winning team, you must know your strengths, and also be keenly aware of what you are up against.

When caregiving becomes a priority, relationships can suffer. Caregiving can be especially challenging for someone who also experiences a role change from adult child to caregiver, or spouse to caregiver. No matter how close you are with your partner, spouse, siblings, or children, conflicts can and will arise. Complicating matters, “parents often have preferences for which child will be their primary caregiver that may stir up resentments with siblings,” says Barry Jacobs, a clinical psychologist, health care consultant and AARP Caregiving Consultant. “How you behave with one another can affect your sibling relationships for the rest of your lives,” he observes. “When you pull together and work together, it can strengthen the relationship. When you don’t, it can weaken the relationship.”

Caregiving Corner.com shares that today, “Gen X and millennials may be doubly stressed because they are often in the sandwich generation- Caring for parents and their own children.” To help navigate these waters, Millennials and Gen Xers are using strategies that might benefit family caregivers of all ages.  “One of their strengths is spreading the workload. A recent report shows that millennial and Gen X family members use technology to support their caregiving. They also embrace more of a team approach than their older caregiving peers do.”

Think of your Caregiving Team as the Houston Astros or Texas Rangers baseball clubs. Your loved one is the coach – calling the shots. As the primary caregiver, you are the pitcher (1) in charge of the rest of the team! Now think about the people you rely on the most or those on whom you can easily call- family members, close friends, church members. Those individuals are your infielders. (2 – catcher, 3 – first base, 4 – second base, 6 – short stop, 5 – third base). Outfielders are those who may live far away and/or can help only occasionally (7 – left outfielder, 8 – 9 – center outfielders, 10 – right outfielder). Some examples could include family members that live out of town, neighbors, your loved one’s primary care physician, local community resources…and ALS Texas!

Remember, every team has players on the bench and ready to go in a pinch, so it’s good to have a list of a few alternates- but you must ASK for the help. Often, friends and family want to help, they just don’t know how. This can be difficult for the primary caregiver, especially if their loved one is resistant to others joining the care team. This is the time for you to tell the Coach what you need; what the team needs to be successful. Even All-Star players need rest and days off.

When building your team, consider which team player is best suited to which responsibilities, based on abilities, financial resources, proximity to you and your loved one, time availability and other key factors.

Don’t forget the big picture; caregiving can be a long season.

  • Watch for the signs. As a primary caregiver, your self-care is also a high priority.  You can’t care for your loved one if you are not taking care of yourself.  Know your limits, and your self-care warning signs. The same is true for your loved one living with ALS. On a stress scale of 1-10, what does a “5” look like for each of you?  Where are you today?
  • It takes the entire team! It’s not just the day- to-day caregiving responsibilities that need teamwork, but also things like yard work, picking up groceries, house cleaning. Who can help in these areas?
  • Pinch hit. Life happens! Who are your back- ups ready to play?
  • Days off. Primary caregivers need time off—to preserve marital harmony or simply re-center. Can you visit other family members? Or could other family members chip in to treat you to an afternoon or evening out?
  • Gifts and talents come in many different forms. It can be financial, physical, or emotional. One person may have less time but more money. Identify your team’s talent, and then build a strong and diverse team.

Think PPF: ask your team to be Patient, Positive and Flexible and have them encourage the same in you.

Tonya Hitschmann, Director of Community Programs

Read the November Newsletter

View Our Upcoming Virtual Events

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

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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

Start Your Own Fundraiser

Donate to Support Texans with ALS

Photos provided by DC Stanley Photography.

Celebrating ALS Caregivers for National Family Caregivers Month

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“There are only four kinds of people in the world.
Those who have been caregivers.
Those who are currently caregivers.
Those who will be caregivers, and those who will need a caregiver.”
― Rosalyn Carter

November is National Family Caregivers month, a time to recognize and honor family caregivers across the country. While ALS Texas is focused on these things year around, November provides us a bonus opportunity to raise awareness of caregiving issues, educate our community, support caregiver self-care and mental health, and increase support for ALS Texas caregivers of all ages.

We look forward to celebrating all of the amazing caregivers in our ALS community in November!

Tonya Hitschmann, Director of Community Programs

National Family Caregivers Month Events

We hosted several exciting events in November 2021 in honor of National Family Caregivers Month. Check out the recordings below!

Veteran’s Caregiver Interview with Laura Garey

For unknown reasons, veterans are twice as likely to be diagnosed with ALS than civilians. ALS Caregiver Lara Garey joined us to discuss the experience of caring for a loved one who is a veteran with ALS.

Watch the Recording

Trauma-Informed Yoga with Ebony Smith

Watch this event in your most comfy yoga pants to experience the healing power of yoga with Ebony Smith from Yoga N Da Hood.

Watch the Recording

National Family Caregivers Month Interview with Special Guest, Broadcast Journalists & Podcast Host, Sarah Trott

Many might remember Sarah Trott from earlier this year as a contestant on the 25th season of The Bachelor. What you might not know is that she is deeply connected to the ALS community. Her father, Tom, was diagnosed with ALS in 2016. At age 19, Sarah’s world view and priorities dramatically shifted as her father and family battled the disease. A few years into her dad’s diagnosis, Sarah temporarily paused her career in broadcast television as a TV reporter and anchor to move home and help her mother and sister with caregiving. On October 20, 2021 in a loving tribute on social media, Sarah shared, “You hung up your jersey last Friday after a hard fight with ALS. Six years of extra innings and surpassing everyone’s expectations both physically and mentally.” Sarah now works with the local and national ALS organizations to advocate for research and caregiver support. She visited with our ALS Texas community to share her experience as a young ALS caregiver and offer resources for young caregivers.

Watch the Recording

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

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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.

Start Your Walk to Defeat ALS Team

Donate to Support the ALS Texas Mission

Cool Cats for a Cure Walk for a Brighter Future without ALS

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The close-knit Martinez family calls the Rio Grande Valley home. Even after Rodolfo Martinez’s shocking ALS diagnosis in 2016, the family remains as close as ever. For the past five years they’ve found community and hope through ALS Texas and the Walk to Defeat ALS.

A Close-Knit Family Discovers a Shocking Diagnosis

Rodolfo grew up in the Rio Grande Valley, but later in life, he moved to Dallas, Texas. He worked a career as a construction inspector for the city of Dallas for 25 years. After he retired, he moved back to the Rio Grande Valley to enjoy his golden years with his family.

Today, Rodolfo, his daughter, Rosie, her husband, and her brother all live together in a quiet home in the Rio Grande Valley. “It’s pretty different from the rest of Texas. It’s another world down here,” she described the region, just seven miles from the Mexico border.

He first started noticing symptoms in early 2016. Rodolfo was experiencing issues with his wrist. His doctor sent him to a physical therapist for treatment. While the physical therapist found nothing physically wrong with his wrist, they did find atrophy of the hand muscles.

Rodolfo next visited a neurologist in the Rio Grande Valley who would eventually send him to Houston for confirmative testing. There he was officially diagnosed in April of 2016. “It was a big shock for the family,” Rosie shared.

Finding Help Along the Way

Rodolfo’s neurologist directed him to the clinic at UT Health San Antonio for further ALS care. At this clinic, Rosie discovered the local support groups hosted by ALS Texas. Rosie’s interest peaked for the group, but Rodolfo still faced denial regarding his diagnosis. “My father sat for a few months, about six months with this fear kind of looming over him,” Rosie shared. A nurse connected the Martinez family to Linda Quiroz from the ALS Texas.

Once we made the connection with the ALS Association, we knew we weren’t alone.

Eventually, Rodolfo, his son Rudy, Rosie and her husband Danny all ventured to an ALS support group. Rosie described their first experience as ‘completely overwhelming.’ “We didn’t participate much, but we just listened and heard the stories. It felt good to know there were other people that were dealing with the same issues, that we weren’t alone.”

Linda Quiroz from ALS Texas prepared them for their first trip to the  ALS clinic in San Antonio, explaining what they could expect from the visit. Since that first trip, Rodolfo has strengthened his relationship with the San Antonio clinic. “He’s since been working with Dr. Jackson and her team,” Rosie shared.

Cool Cats for a Cure

During those initial meetings, Linda also invited the Martinez family to join the Texas Walk to Defeat ALS in 2016. “We decided to check it out. Let’s go anyway and see what it’s about,” Rosie said.

The family had quick shirts made and a small team of family members and friends. Cool Cats for a Cure was born. “My dad and I love cats. We’ve had cats my whole life. Every year my husband designs a new shirt with a cat on it.” Rodolfo feels like a true cool cat at the Walk to Defeat ALS and is completely behind it.

The Benefits of Local Care Programs

“Previous to my dad’s diagnosis, I heard about ALS through the Ice Bucket Challenge,” Rosie shared. “But I had no idea what ALS was.” You never know who will be affected by the disease, it affects people both young and old, from all walks of life, races, and genders. “In my dad’s case, it was spontaneous, it wasn’t hereditary. We really need to find a cure for this horrible disease.”

Rosie expressed gratitude to Dr. Jackson and her team in San Antonio for supporting her father. She helped him get approval for Radicava which has been extremely helpful in slowing his progression.

They [ALS Texas] provide lots of guidance and support. They help us find equipment when we need it. They’ve really helped us navigate this journey… He loves Linda. He loves the [clinic] team, the doctors and nurses, especially in San Antonio, Texas, they’ve made a great connection.

Rosie recalls how in 2017, ALS Texas also helped establish a multidisciplinary clinic in the Rio Grande Valley. For those with ALS in the area who couldn’t travel to distant cities for clinic, this resource is life-saving. Until this year, Rodolfo had received  primary care at the San Antonio clinic. Now he’s transitioning his care to the Rio Grande Valley clinic. His family knows that now there are equipped doctors locally to help in case of an emergency.

Support a Brighter Future without ALS

The Walk is important not only because of the awareness piece, but also because it supports local programs for Texans living with ALS. The Martinez family and so many others benefit from no-cost equipment loans, support groups, ALS clinics, and the critical research for a cure. Your support of the Walk funds these crucial programs. Will you join the fight?

It’s very important for others to participate in the Walk so we can spread awareness and also raise funds to get us closer to a cure…I see a brighter future ahead for when we can end the disease.
– Rosie Martinez

Start Your Walk to Defeat ALS Team

Donate to Support the ALS Texas Mission

Team Toujours Provence Joins the Walk to Support Texans with ALS

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

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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.

Looking for an ALS Clinic? Find one here

Read more about the HEALEY ALS Platform Trial

Caballero Family Finds Wind to Raise Awareness to ALS

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For Priscilla Caballero, her mother, Maggie, had always been a source of strength. Maggie was a single mother and raised her 4 children along with the help of their grandmother. Now grown up, Priscilla is a third-generation restaurant owner, and she uses the restaurants as platforms to help raise awareness and bring people together in the fight against ALS.

The Long Road to Diagnosis

Maggie and her family first started noticing signs of ALS in the summer of 2018 when Maggie was frequently tripping. The family visited a podiatrist who told them that Maggie had a sprained ankle, but when months passed, and Maggie’s mobility got worse, they realized they needed to see a neurosurgeon.

“That appointment was eye opening and concerning because he sat there and told us he had never seen anything like that. He couldn’t explain what was causing that lack of mobility in her foot,” Priscilla said about the visit to the doctor.

Maggie was told to see a neurologist, but with the holidays, they were not able to get an appointment until the end of December. By Halloween, Maggie was unable to move her leg all the way up to her hip, and shortly before Thanksgiving, the family became so concerned about her condition that they took Maggie to North Methodist hospital where she stayed for three days. A nurse there told Priscilla “if it was my mom, I would take her straight to University Hospital,” stating that they have more equipment there to help get answers.

Priscilla and her family did just that and took her mother straight from one hospital to the next. After a long 48-hour wait, the family was finally able to get a room on the neurology floor. As the tests and treatments continued, it became more and more clear that Maggie most likely had ALS.

“It was shocking because the first thing they do is hand you a paper that says terminal. The more you researched it, the more devastating it was.” Priscilla said, “Our only hope was maybe they’re wrong. Maybe it’s something else. But when we went to that first appointment, and the doctor told us it was ALS, and that there was no doubt, it was really hard to accept.”

A Whole New World

After the diagnosis was confirmed, Priscilla and her family got in contact with the ALS Association of Texas.

“Even in that short journey, we went to the ALS Association of Texas meetings which were so life-changing, because from the first time we went, she got to see that she wasn’t alone. We got to meet some incredible people that not only helped her as the patient, but also helped us as the caregivers because we were in a whole new world. We had to learn how to clean feeding tubes, how to rotate in bed.”

Priscilla and her family were able to keep her mother at home, and even though it was hard to see her decline, Priscilla says it was a good opportunity for the family to get every moment they could with Maggie.

ALS Texas continued to help Priscilla, Maggie, and their family throughout the journey by providing equipment, information, and support.

“The ALS Association of Texas lent us the eye gaze technology. And I’m so grateful for that because in her last weeks, those were the only way we communicated with her. Her last words were the words that computer read off to us, and that’s incredible”

Wind Warriors

The 2019 Walk to Defeat ALS was the family’s first walk. Maggie chose the name “Wind Warriors” for their team because “she always liked angels, wings, and things like that, so we thought it’d be great.” The team wore wings to the walk and even put wings on the back of Maggie’s wheelchair for the event.

“We put wings on the back of her wheelchair; for us it reminds us that she flies because when she was in that chair, she got mobility. She got wind.”

Priscilla’s Family used their restaurants as a platform to kick-start their fundraising. They sold t-shirts, held their own ice bucket challenges, and even held a special fundraising dinner. Together, they raised thousands of dollars to support Maggie and other Texans with ALS.

“It was nice to see so many people come together for that cause,” Priscilla said.

Maggie passed away in March of 2020, but her family continues to walk so they can support other families affected by ALS.

“It’s important to us because we know so little about this diagnosis and because no other family should have to suffer this way. I feel that awareness and knowledge need to be brought out in the medical industry. There were times that we got hospitalized and there were nurses and doctors who had no idea what ALS was.

Maggie’s influence continues to live on with her family; she had wanted nothing more than to have a granddaughter, and Priscilla found out that her new baby was a girl on the one-year anniversary of Maggie’s passing. She considers this a blessing and has named her daughter Maggie after her mother. She is glad that she was able to enjoy her mother’s final moments with her and encourages others to enjoy the time they have to spend with their loved ones with ALS.

“Although it’s an incredibly devastating diagnosis, try to look at it in some positive way and cherish every moment. I think the only good things I can say about the diagnosis was I could’ve lost my mom to a heart attack or an aneurysm – something where I never would’ve had time to say my goodbyes. We got 14 months to cherish every moment with her.”

 

 

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Maggie Shares Her Story  in 2019

A Note from Tonya: Seasons of Change

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If we had no winter, the spring would not be so pleasant. If we did not taste adversity then prosperity would not be so welcome. – Anne Bradstreet

At about this same time every year, we begin to notice the changing of seasons all around us.  Since we live in Texas, it’s not quite like this scene from an October Vermont vacation that I took in 2017, but we still notice the falling leaves that need raking, cooler temperatures, changing colors- and pumpkin spice lattes.  In fact, we know that we can count on it happening every year.

We observe our environment cycling through phases and stages of transition. We also quickly realize that nothing ever stands still, that nothing ever maintains its current state for very long. All of nature cycles through seasons of change and transformation, effortlessly and naturally — just like we transition through psychological and physical states of transformation throughout our lives; although, sometimes not quite as effortlessly and naturally.

The seasons of life are, sadly, not as predictable as the earth’s seasons!  Sometimes they last a great deal longer than you want them to!  Sometimes they last a short amount of time.

To grow through life’s inevitable ups and downs, we must move through each season in turn, as illustrated below by seasonsofchange.com

Fall – Sensing a Shift in Your Life and Preparing for What’s to Come

Early Winter – Retreating, Reflecting and Reconnecting with Your Deep Nature

Winter Solstice – Catching Sparks of Hope in the Darkness

Late Winter – Exploring and Experimenting to Firm Up Your Vision for the Future

Spring – Bursting into Bloom and Putting Your Plan into Action

Summer – Celebrating Your Harvest

We naturally create and transition between the four seasons of life as a result of our responses and reactions to everything around us-people, events, and circumstances. This essentially means that HOW WE RESPOND to our environment will directly influence what we get back from our environment — whether they are problems or opportunities.

You cannot control the seasons that come into your life (much as you may want to!), but you can control how you respond to each one.  Don’t hate the season. CHANGE your mindset and perspective and experience each season as a learning experience, not a time to simply endure and get through. You will also learn new things about your strength and yourself, which in turn will help you grow.

What season are you in or transitioning through right now?  Life is a journey with many phases. Let’s not allow the pain of one season to destroy the joy of others.

Tonya Hitschmann, Director of Community Programs

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