ALS Texas

2021 Mid-Year Update: Serving More Texans with ALS Now Than Ever Before

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It’s been a year of constant change. But one thing remains the same – our commitment to serving Texans with ALS and their families. Last year, we served more Texans with ALS than ever before – and because of your support, we’re on track to serve even more people in 2021.

We’ve been listening to our community and have seen the need for greater support for caregivers, youth and children. This year, we’ve rolled out new programs to address these needs to better serve our entire ALS Texas community.

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

Local Care

Our team works to provide 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-July 2021:

1,100 Texans with ALS are Registered with Our Chapter
(Compare to 938 at this time in 2020)

202 New Texans with ALS
(Compare to 168 at this time in 2020)

1,226 Total Texans with ALS Served
(Compare to 1,065 during this time in 2020, and 1,272 in all of 2020)

1,200+ Family Caregivers, Youth and Children Served

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

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 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.

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

Patient & Family Groups

  • Austin Connection Group
  • Corpus Christi Connection Group
  • Dallas / Fort Worth Connection Group
  • Houston Connection Group
  • Rio Grande Valley Connection Group
  • San Antonio Connection Group

Caregiver Groups

  • Spanish-Speaking Caregiver Group (Launching October 5, 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 (Launching Fall 2021)
  • Veteran’s Support Group
  • Bereavement Support Group

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

From February-August 2021:

  • 83 Virtual Support Groups
  • 583 People Attended Virtual Support Groups

Read more about the growth of support groups

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, and a sneak peek at future programs.

Navigating ALS Series

  • This special four-part series was designed for newly diagnosed families or those curious about the ALS journey. Participants learn everything from the basics of ALS to insurance and unemployment, to research and multidisciplinary care.

Educational Workshops

  • ALS & FTD: A presentation that overviews the specific challenges of combined ALS and frontotemporal dementia.
  • Respiratory Issues in ALS: Community partner, RQS, reviews the common respiratory issues in ALS and how to address them with assistive technology.

Mental Health & Wellness

  • Stress Less on Purpose: A special workshop on self-care for everyone on the ALS journey.
  • Running on Empty: A special workshop on compassion fatigue and burnout for caregivers.
  • Anticipatory Grief: Community partners discuss how to work through anticipatory grief.

Caregiver Presentations

  • To Taste Cooking Demos: Community partner, To Taste, share easy-to-prepare meals that are friendly for the whole ALS family, while demonstrating nutrition and texture modifications for those living with ALS.
  • National Caregiver Month Presentations (Coming in November)

Other Special Events

  • Youth and Children In-Person Workshop (Coming Soon)
  • Trauma-Informed Yoga Sessions (Coming Soon)

View a full list of upcoming virtual events and presentations

View past virtual event recordings

Looking to the Future

Because of you, we’ve continued to innovate, collaborate with community partners, and serve our ALS Texas community. Thank you for your continued support. Together, we can create a world without ALS.

Get Involved

Interested in helping us create a world without ALS? Join the Walk to Defeat ALS (at Home), start a fundraiser or donate today.

Join the Walk to Defeat ALS

Donate to Support the ALS Texas Mission

Advancing Research: The HEALEY ALS Platform Trial

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In 2020, the ALS Association, in partnership with Massachusetts General Hospital, launched an innovative approach to research, the HEALEY ALS Platform Trial. In most clinical trials, a single drug is tested, and participants cannot be enrolled in more than one trial at a time. The HEALEY ALS Platform Trial enables us to test multiple proposed drug treatments at once. This is a model that has been successful in cancer research. It accelerates our search for effective treatments for people living with ALS by allowing investigators to test more drugs, increase patient access to trials, and reduce costs by quickly and efficiently evaluating the effectiveness of multiple therapies. There are now 54 test sites nationwide, three of which are in Texas.

Texas Neurology was one of the first five initial sites for the new model. “This is big. I’ve been doing trials since the early nineties. The average trial takes 8 years. Going through platform methodology shortens it to 2-3 years,” states Dr. Daragh Heitzman, clinical director at Texas Neurology. Dr. Heitzman was recently appointed to the HEALEY ALS Platform Trial Executive Committee, as the first physician investigator to join an elite group of scientists.

“What’s different about this trial is that the placebo group is being shared for all five drugs, such that the number of participants who actually get a drug is dramatically increased. So, it’s a lot quicker to get to an answer, more patients are getting drugs, and less getting a placebo.”

Trial participants will have the option to continue treatment for at least a year, and if the drug shows promise during the six-month trial, the FDA could potentially fast-track its approval, getting a crucial treatment to people living with ALS.

Texas HEALEY ALS Platform Trial Sites

  • The ALS Clinic at Texas Neurology in Dallas
  • Houston Methodist ALS Clinic
  • The ALS Clinic at UT Health San Antonio

Read more about Dr. Heitzman and the clinic at Texas Neurology

How ALS Patients Can Help with Research

The ALS Clinic at Texas Neurology

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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.

Find an ALS Clinic

In Memory of ALS Hero Pat Quinn

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“Every August Until a Cure”

Pat Quinn was a native of Yonkers, New York and was diagnosed with ALS in March of 2013, just one month after his 30th birthday. Immediately after his diagnosis, Pat vowed to make a difference for others living with the disease. He fulfilled that promise, establishing himself as a leader in the ALS community, spreading awareness, raising funds for research, and becoming a champion for the cause.

In 2014, Pat co-founded the viral fundraising phenomenon, the Ice Bucket Challenge, alongside Pete Frates and others. ALS was a relatively unknown disease at the time, and the Ice Bucket Challenge not only increased awareness, but also raised $220 million worldwide for research, awareness, and local care.

“ALS is a disease that never stops attacking. It’s relentless, unforgiving, and discriminates against no man or woman. We need to make a change and we need to start now. The Ice Bucket Challenge was an amazing start, but we need to push further” – Pat Quinn

Since the Ice Bucket Challenge, Pat has continued working tirelessly as an ALS advocate, raising funds for research and spreading awareness through Quinn for the Win.

“I was put on this earth to make a difference in the course of such a horrific disease, and I also believe my tough Irish blood has something to do with that.”

Pat passed away on November 22, 2020 at the age of 37, but his legacy will live on in the hearts of the ALS community. Thank you, Pat, for your tireless work to advance research so that one day, we can create a world without ALS.

Walk to Defeat ALS Hero: Maria G. Sanchez

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Written by Maria’s daughter, Melissa.

Maria was a hero to everyone for many reasons. For her closest family, friends, and mentees it was because they could feel that Maria possessed the ability to see the very best in them no matter what. They knew that her occasional tough love was actually just the frustration she felt from them not living up to their own limitless potential.

Quite literally, she was a hero because she was a registered nurse, a nurse manager at University Medical Center (UMC) in El Paso, and a clinical instructor for The University of Texas at El Paso School of Nursing. She was a go-getter, a leader, and well-respected at the hospital and in her community. Maria was dedicated to patient care, and accomplished many “firsts” for UMC. She was a mentor to many. So much so that her UMC family continues to raise awareness for ALS and joins the Walk every year in her memory.

“She was full of life. We would go out shopping, and she would out-last everybody,” her daughter Melissa says. She always had an inappropriate joke, a Maya Angelou quote, uplifting advice and a prayer ready for any situation and any person that needed it.

Maria worked to instill strong values in her children, Melissa and Francisco, and sparked their desire to give back. Her motto was: “To whom much is given, much is required.” Melissa and her brother saw this in action, as their mother continuously helped family and gave back to her community, never expecting anything in return.

When Maria was diagnosed with ALS in August 2015, she didn’t tell her children or her family until January. She wanted to protect them, as she always did. She took the initial heartache, head on, with only her husband David by her side. She referred to him as her rock and her angel because he stood by her side through every heartbreaking battle so that their children and family didn’t have to worry. And they didn’t because they knew she was in the best hands.

During her battle with ALS, her humor and unwavering faith gave her family peace. Her smiles in photos were bigger than ever. Her daughter believes she did this consciously in order to show her loved ones that not even ALS could destroy her fighting spirit and the love she had for them. Her whole life, she embodied the Maya Angelou quote, “We may encounter many defeats, but we must not be defeated.”

After Maria passed away, her family felt called to honor one of Maria’s final wishes, “Life goes on,” she said, “You have to go on.” There was no better way for them to go on than to honor her life by continuing her legacy of giving back by starting the Walk to Defeat ALS team Maria G. Sanchez’s Warriors and volunteering with the ALS Association of Texas. They have even started reaching out to corporations to help secure corporate sponsorships for Walk to Defeat ALS. Their hope is that their efforts contribute to helping people with ALS and their families in even the slightest way.

“I want to tell people with ALS that you are not forgotten. You are not alone. My Mom at times felt like she was a burden to us, but it is the honor of our lifetime to be there for you in your time of need, just as you have always been there for us. You’re our heroes and you will always be our source of strength.”

Want to get involved and support Texans with ALS like Maria?

Join Maria G. Sanchez's Warriors

Start Your Walk to Defeat ALS Team

Walk to Defeat ALS Hero: John Lay

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John Lay is a 3rd generation Austinite and a 4th generation Texan with a long history of being active in his community. He served on the Austin ISD school board for eight years and furthered his love for the river by serving on the Colorado River Alliance board for twenty years. Recently, John was bestowed the honor of having their annual River Hero award named after him. Family is everything to John and his wife Jill. Their tight knit family of five children and eight grandchildren must agree, as they all live within three miles of one another. John is outgoing, has never been afraid of a microphone or podium, and his children often joke that they are jealous of their parents’ fun social life and incredible friendships. John often says, “Surround yourself with people that make you smile.”

In early 2018, John started to have weakness in his arm. He consulted multiple doctors and went through many tests in search of an explanation. After no diagnosis had been made, he started to suspect that something serious was going on but didn’t want to worry his children. After a muscle biopsy later that year, a motor neuron disease was indicated. In early 2019, he was referred to Dr. Stanley Appel at the Houston Methodist ALS Clinic, and was diagnosed with ALS. The prognosis for survival with ALS patients is two to five years.

John and his wife Jill sat down with their family and shared the diagnosis without shedding a tear.

“I’m 70 years old, I’ve lived a long great life. Don’t be sad for me. The good news is we know this now and we have time together,” he told his children.

As soon as he was diagnosed, John and his family got to work researching everything they could about the disease and found the ALS Association of Texas. John and Jill joined the monthly support group and his children started their Walk to Defeat ALS team.

At first, John was hesitant to tell his story. He saw people in the support group and at the ALS clinic who were younger, with small children, and in later stages of the disease. When diagnosed, John was in his seventies, at the beginning stages, had watched his children grow to adulthood and have children of their own. He felt fortunate compared to many other patients.

Then John had a thought: “How do we raise awareness for this, not just for me, but for everyone with ALS?” As his children worked on their Walk team, they learned more about ALS advocacy and the work of the ALS Association of Texas. They talked to their dad about the impact of telling his story. John realized that “If my story can help other people and raise awareness, let’s go big for the Walk. I’m ready.”

The Lay family started recruiting friends and family to join Team John Lay for the Walk to Defeat ALS. “Everyone who has ever met our dad just loves him… They would do anything for him,” says his children. More than 150 people walked, 340 donated, and they raised $55,000!

They continued their Walk celebration at an after-party at a friend’s restaurant where John gave a speech.

“This has been the best year of my life,” John said. “The support that my family, friends, and children’s friends have given me has been incredible. This is a journey and I’m on the journey, but as I always tell people, everybody’s got something. Each person has situations with their own family, you just deal with those things, you support one another and keep smiling. I wake up every morning and I’m happy to be here and I try to make the best of each day.“

John was accepted into Dr. Stanley Appel’s groundbreaking Treg trial in March, just when COVID-19 hit Texas and everything shut down. But John was determined. “If I can be part of the science to move the ball forward to slow the progression or find a cure, to be able to contribute that, then I don’t feel like I’m sitting down not doing anything,” he said. Right now, John doesn’t believe he will see a cure in his lifetime. But Dr. Appel’s trial has been shown to slow the progression of the disease, and that could make all the difference for a person living with ALS. John isn’t participating in the clinical trial for himself. He’s doing it to help others in the future. And he believes that if someone is going to find a cure, it’s likely to be Dr. Appel and his team.

The ALS Association funds Dr. Appel’s Treg study and supports the Houston Methodist ALS Clinic, which is why John and his family are passionate about raising funds through the Walk to Defeat ALS.

Since his diagnosis, John has lost the use of his arms. But he has still made it a priority to live life to its fullest. After his diagnosis in 2019, he took a kayak trip down the Colorado River, went to Wrigley Field, and visited the casinos in Lake Charles. Today, he’s spending as much time as possible with his family and friends, which has been challenging during the pandemic.

This year, the Walk to Defeat ALS is going to be much different due to the pandemic. Instead of bringing teams together for one large event, as we have done in years past, teams are encouraged to host their own Walk to Defeat ALS at Home, in the way that works best for them. On October 31, instead of bringing together a team of 150, the Lay family will gather and walk around their neighborhood, at a social distance, walking in unity with the ALS community across Texas.

Fundraising during a pandemic is a challenge, “This is a disease where you can’t sit on the sidelines for a year or two because of the impact of COVID. ALS can’t wait. It’s going to be harder to get federal funding during the pandemic, so it’s going to be things like the Ice Bucket Challenge, the Walk, and individual donations that moves the needle closer to slowing the progression of ALS,” his children say.

John is grateful for his circumstances, which can be a surprising thing to hear from someone who has been diagnosed with ALS. He has chosen to approach this in a positive way, cherishing each day he spends with his loved ones, sharing his story, participating in the clinical trial to move research forward and raising funds so that one day we can live in a world without ALS.

Want to get involved and support Texans with ALS like John?

Join Team John Lay

Start Your Walk to Defeat ALS Team

ALS Drug Shows Further Promise, Slowing Progression and Increasing Survivability

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Muscle and Nerve has published the results of the open label extension study of AMX0035, a promising new drug therapy for people with ALS developed by Amylyx. The study showed that people who received the drug lived about 6.5 months longer than people who received the placebo during the trial. This finding is in addition to the findings from the phase 2 trial, showing that people with ALS receiving this drug experienced a significantly slower decline in disease progression, compared to those on a placebo.

As quoted in the New York Times article, Neil Thakur, chief mission officer of the ALS Association, states, “That is a very meaningful benefit for people affected by this devastating, fatal disease.”

These findings further show that the treatment should be made available to people with ALS as soon as possible. We urge the FDA and Amylyx to work together to bring this treatment to market as soon as possible and we stand ready to help ensure that happens. You can help by signing our petition to the FDA and Amylyx at als.org/petition.

Walk to Defeat ALS Hero: Judy Baucom

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Dawn and Shelley have been participating in the Walk to Defeat ALS in Dallas for the past nine years in memory of their mom, Judy Baucom.

Shelley says, “Mom was the most selfless person I’ve known, who always put others first and loved big.  She was a great listener and gave the best advice – my kids still talk about things that she had told/taught them!  Up until the end, she wanted to make sure her family and those around her were taken care of – her concern for others took priority.”

True to her nature, Judy had been taking care of her sister, who was battling cancer, when the first signs of ALS started to appear. She was dropping things a lot, tripping occasionally, and her speech was a bit slurred. But Judy and her family all thought it was due to the stress and exhaustion due to caring for her sister. “It all makes sense now, but at the time she just chalked it up to ‘I’m tired, it’s old age,’” says Dawn.

Judy pushed past her own symptoms and continued to lovingly care for her sister until she passed away in June. Three days later, Judy had a fall and her left side went numb. Everyone thought it was a stroke, due to the stress of losing her sister. She went to rehab, and her family noticed that even with physical therapy, she still was not improving, but instead getting worse. In September, she went to the ER with leg weakness and tremors, and after seeing a neurologist for tests, was diagnosed with ALS.

As soon as her family found out about the diagnosis, Dawn and Shelley researched the disease and signed up Team Judy for the Walk to Defeat ALS in November 2012.

Judy helped design the team shirts for her Walk team. She loved hummingbirds, and included one on the front of the shirt. Her Occupational Therapist, upon learning that Judy was an artist, created a stamp of Japanese characters for “hope” and “strength” that she put on the back of the shirt. He even bought her a watercolor kit so she could continue to paint the hummingbirds she loved.

After her fall, Judy lost the ability to speak, and relied on a small whiteboard to communicate with her loved ones, often writing words of encouragement and inspiration for her daughters. Even in the midst of ALS, she was still caring for others.

Judy’s health declined quickly, and in October went to a hospice facility in Tyler.  She passed away on November 10 – the same day as the Walk to Defeat ALS, and merely six weeks after Judy had been diagnosed. The night before, Dawn and Shelley visited their mom, knowing she did not have much time left, said their goodbyes and told her they were going to the Walk to Defeat ALS. They got the news early the next morning that she had passed away. “She knew we were walking. We always said she wanted to be there with us,” says Shelley.

At the Walk to Defeat ALS, in addition to friends and family, Judy’s nurses, physical therapists, and other people she had briefly met during since her ALS diagnosis, joined Dawn and Shelley. Judy had known some of these people just a short amount of time, but she had made a significant impact on them and inspired them to join the Walk in her honor.

“Mom not only showed strength through this whole process, but beautiful FAITH.  She was continually thinking of others and shared her Faith and Love in the Lord.  What a wonderful Legacy she left behind, and we have been so blessed to have her as our mother and friend.”

Dawn and Shelley have continued their mom’s legacy in the nine years since she passed. Over the years, they have hosted fundraisers for their friends and family, auctioned off Judy’s paintings to raise funds, and hosted a BBQ on Walk day for the Dallas ALS community, all to fulfill the vision of creating a world without ALS.

“ALS is a horrible disease…That’s why we do what we’ve been doing since the morning she passed. Try to raise funds and make sure that those that are still fighting and continue to fight have a chance. And that’s how we honor our mom,” says Dawn.

Want to get involved and support Texans with ALS like Judy?

Join Team Judy

Start Your Walk to Defeat ALS Team

Walk to Defeat ALS Hero: Tony Dallas

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Tony Dallas’ family has always been competitive. They are a “baseball family” – Tony had played and coached baseball, and his sons followed in his footsteps. So, when Tony lost an arm-wrestling match to his sons over Thanksgiving, his family didn’t think anything of it. But Tony, being the competitive person he’s always been, was confused, because he typically didn’t lose to his sons. In December, he started to notice more weakness in his arms and went to see his general practitioner. After several doctors’ visits and tests, he was referred to Dr. Stanley Appel at the Houston Methodist ALS Clinic and was diagnosed in July 2019.

Tony is a self-made man. He owns an insurance business in his small town of Orange, Texas where he grew up. He and his wife have been together since the age of 14, and they have worked to create a better life for their children, instilling values of selfless giving. On Thanksgiving, the family always volunteers to help others. He has been very involved in his community, coaching his sons and many other students in baseball and football, serving on boards and finding ways to give back. Tony has supported friends, classmates of his children, and organizations in his hometown, always anonymously. He doesn’t want it to be about him.

Tony’s motto is “Do good things to improve the lives of others, not for self-gratification.”

When Tony was diagnosed, his family wanted to find a way to get involved and spread awareness. “We had no idea what ALS was, we only knew about the ice bucket challenge,” says Leigh Anne Dallas, Tony’s daughter. “ALS either changes your whole world or you don’t know what it is at all, and we wanted to change that.”

Leigh Anne discovered the Walk to Defeat ALS was happening and signed up Team Dallas to participate two weeks before the 2019 Walk. They reached out to their inner circle and started selling shirts to help raise money to go towards their walk team, thinking they would probably only sell a few. They ended up selling 600 shirts and raising $10,000 in two weeks!

The lack of awareness about ALS and supporting their father is what drives Team Dallas. For 2020, they set a goal to raise $13,000, in honor of Tony’s lucky number 13 that was on his baseball journey. They met that goal in a mere six days. Now, their goal is $30,000 (and they’re just about to surpass it!)

The money our team has raised and the community support is the biggest testament to our dad,” says Leigh Anne.

The Orange community has really rallied around Tony Dallas and his family. This year, because of COVID-19, Texas Walk to Defeat ALS events will be hosted differently for each individual team on October 31st. Team Dallas will be holding a mini walk at their local outdoor pavilion and are setting up a Walk route through downtown. Other local families affected by ALS are attending their event as well. So far, they have more than 200 people registered as part of Team Dallas.

During the pandemic, Tony and his family have had to take additional precautions. They frequently sit on their front lawn to visit with friends and family and watch people drive by, still immersed in their community from a distance.

Once you are in this world, the people who are also diagnosed with ALS become a part of your family,” says Leigh Ann.,  “I hope we can do something to honor him always and I hope other families can see you don’t have to let ALS consume you and it doesn’t define who you are as a person.

Tony and his family feel that funds raised through the Walk to Defeat ALS will have a big impact on future treatments and a cure. “Will it benefit him? Probably not. But it will benefit someone else’s family and might prevent them from having to go through this,” says Leigh Anne.

“I hope that we are able to do our part, whether it be through advocacy, or something else, to leave a mark and be there for other families. I hope we can do something to honor him, always. And I hope other people and other families can see that you don’t have to let ALS consume you. It doesn’t define who you are as a person,” says Leigh Anne.

Daddy’s biggest thing has been ‘I will not stop living my life.’’

Want to get involved and support Texans with ALS like Tony?

Join Team Dallas

Start Your Walk to Defeat ALS Team

2020 Mid-Year Update: We’re Here for Texans with ALS, No Matter What.

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In March, COVID-19 changed everything. Like others, we had to adjust the way we were operating, while finding ways to continue to deliver care to our ALS community in Texas. Because of your support, we have been able to work closely with Texans with ALS and their families to continue helping them navigate the disease and provide them with crucial resources.

Here’s an update on how your support has impacted Texans with ALS during this time.

Local Care

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

From February-July 2020:

938 People with ALS are Registered with Our Chapter
(compare to 887 at this time in 2019)

168 New Patients
(compare to 160 new patients during this same time in 2019)

1,065 Total Patients Served
(compare to 1,207 total in all of 2019)

Learn more about our Local Care Programs.

Equipment Loans

Our Equipment Loan Program provides crucial medical equipment to people with ALS, free of charge. COVID-19 impacted this program significantly, and due to safety concerns, we were unable to access and deliver much of our equipment in our loan closet. We were purchasing new equipment to continue to meet the needs of people with ALS, but saw our funding dwindle rapidly. We asked for your help, and through your support, we were able to get the funding needed to continue this vital program. Now, we’re working with our partners to deliver needed equipment in a safe manner, and ensuring people with ALS have the equipment needed to navigate their everyday lives.

From February to July, 2020:

243 Pieces of Equipment Loaned to People with ALS

If you are a person with ALS or caregiver who needs help with equipment, please contact us.

ALS Multidisciplinary Clinics

Many of our ALS Multidisciplinary Clinics had to cancel regular clinic days due to COVID-19. As time has progressed, each clinic has modified their operations to best serve the safety of their community. Some remain closed until is a vaccine in place, some are allowing individual visits, and some have put new safety measures in place to enable clinic days. We’ve been working closely with our clinic partners to help keep our ALS community safe and ensure our presence as a resource for Texans with ALS and their families.

We partner with 11 ALS clinics across the state of Texas. You can see the latest update about clinics here.

Staying Connected

Gathering in-person is not an option for our ALS community, as people with ALS are high-risk. To stay connected from afar, we moved all of our support groups to virtual groups, which have continued to meet monthly. In addition, we moved planned in-person educational presentations and workshops to virtual platforms and made them available statewide.

From March-August 2020:

80 Virtual Support Groups, Workshops, and Presentations

500+ People Engaged in Virtual Events

You can view our upcoming virtual events here, and watch recordings of past events.

New Family Programs

We’ve been closely listening to our ALS community to determine our impact and discover areas where additional resources are needed. Two big needs have emerged: greater support for caregivers and programs for youth and children. This year, we have started rolling out these programs virtually, despite the challenges of the pandemic. These include:

  • Workshops for caregivers to help manage stress and tips for self-care
  • Workshops for multiple age groups of youth and children to help them cope with the diagnosis and care of a loved one
  • Bereavement support group
  • Caregiver morning coffee support group
  • Youth Leadership Council

Interested in learning more? Contact us.

Looking to the Future

In the face of the pandemic, because of your support, we were able to shift to virtual support groups, overcome challenges to get medical equipment to people with ALS, and create new programs to support  caregivers and families.

Thank you for your continued support. Together, we can create a world without ALS.

Get Involved

Interested in helping us create a world without ALS? Join the Walk to Defeat ALS (at Home), start a fundraiser or donate today.

Join the Walk to Defeat ALS (at Home)

Start a Fundraiser

Donate