ALS Texas

  • Understanding ALS
    • ALS Symptoms
    • Stages of ALS
    • What Causes ALS?
    • Lou Gehrig and the History of ALS
    • ALS Glossary
  • Who We Are
    • What We Do
    • Our Leadership
    • Financial Information
    • Our Partners
    • Careers
  • Research
    • How ALS Patients Can Help
    • Research Resources
    • Research News
    • ALS Association Research
  • Navigating ALS
    • Newly Diagnosed
      • What Do I Do Now?
      • How to Share Your Diagnosis
      • Second Opinions
      • Resources
      • Clinics and Centers
    • Living with ALS
      • For Patients
      • Therapies & Care
        • Nutrition & Feeding Tubes
        • How to Improve Mobility
        • Dealing with Breathing Issues
        • Dealing with Speech & Swallowing Issues
        • Types of Assistive Equipment & Technology
        • Clinics and Centers
      • Living Setting
      • Daily Living Activities
      • Leisure Activities
      • Accessible Vehicles
      • More in Depth Resources/Manuals
    • Coping with ALS
      • Dealing with Anxiety/Depression
      • Changes in Thinking & Emotional Lability
      • Support Groups
      • Resources
    • For Caregivers
      • Caregiver Program
      • Caregiver Resources
      • Practicing Self Care
      • From One Caregiver To Another
    • For Youth & Children
    • Virtual Support Groups & Workshops
      • Past Virtual Event Recordings
    • Resources
      • Healthcare/Insurance
      • Hospice & Palliative Care
      • Finances/Employment
      • Taxes
      • Advance Directives
      • More in Depth Resources/Manuals
      • Register with ALS Texas
  • Get Involved
    • Walk to Defeat ALS®
      • Register for a Walk
    • Texas Chapter Events
      • Houston Marathon and Half Marathon
      • All In For ALS Poker Tournament
      • Sporting Clay Shoot
      • Under Ballou Skies Golf Classic and Party
      • ALS Fishing Classic
      • The Cowtown Affair
    • Calendar of Events
    • Fundraising Opportunities
    • Ways to Give
      • Corporate Partnerships
      • Workplace Giving
      • Community Giving Programs
    • Volunteer
    • The ALS Ice Bucket Challenge
  • Advocate
    • Advocacy Day
    • Advocacy News
  • Contact Us
Menu
  • Understanding ALS
    • ALS Symptoms
    • Stages of ALS
    • What Causes ALS?
    • Lou Gehrig and the History of ALS
    • ALS Glossary
  • Who We Are
    • What We Do
    • Our Leadership
    • Financial Information
    • Our Partners
    • Careers
  • Research
    • How ALS Patients Can Help
    • Research Resources
    • Research News
    • ALS Association Research
  • Navigating ALS
    • Newly Diagnosed
      • What Do I Do Now?
      • How to Share Your Diagnosis
      • Second Opinions
      • Resources
      • Clinics and Centers
    • Living with ALS
      • For Patients
      • Therapies & Care
        • Nutrition & Feeding Tubes
        • How to Improve Mobility
        • Dealing with Breathing Issues
        • Dealing with Speech & Swallowing Issues
        • Types of Assistive Equipment & Technology
        • Clinics and Centers
      • Living Setting
      • Daily Living Activities
      • Leisure Activities
      • Accessible Vehicles
      • More in Depth Resources/Manuals
    • Coping with ALS
      • Dealing with Anxiety/Depression
      • Changes in Thinking & Emotional Lability
      • Support Groups
      • Resources
    • For Caregivers
      • Caregiver Program
      • Caregiver Resources
      • Practicing Self Care
      • From One Caregiver To Another
    • For Youth & Children
    • Virtual Support Groups & Workshops
      • Past Virtual Event Recordings
    • Resources
      • Healthcare/Insurance
      • Hospice & Palliative Care
      • Finances/Employment
      • Taxes
      • Advance Directives
      • More in Depth Resources/Manuals
      • Register with ALS Texas
  • Get Involved
    • Walk to Defeat ALS®
      • Register for a Walk
    • Texas Chapter Events
      • Houston Marathon and Half Marathon
      • All In For ALS Poker Tournament
      • Sporting Clay Shoot
      • Under Ballou Skies Golf Classic and Party
      • ALS Fishing Classic
      • The Cowtown Affair
    • Calendar of Events
    • Fundraising Opportunities
    • Ways to Give
      • Corporate Partnerships
      • Workplace Giving
      • Community Giving Programs
    • Volunteer
    • The ALS Ice Bucket Challenge
  • Advocate
    • Advocacy Day
    • Advocacy News
  • Contact Us
  • DONATE
Menu
  • DONATE
Donate

Family Bonds: How team BobKat Came Together

October 1, 2021 by Katie Gilroy 1 Comment

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

The Diagnosis Process

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

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

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

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

Joining the Walk

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

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

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

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

Helping Others Along the Way

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

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

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

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

Start Your Walk to Defeat ALS Team

Donate to Support the ALS Texas Mission

 

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

How ALS Texas Supports the Emotional Needs of Our Heroic Veterans

September 23, 2021 by Rhema Jones Leave a Comment

September 23, 2021, marks the thirteenth anniversary of the Department of Veterans Affairs recognizing ALS as a service-related disease. Those who have served in the armed forces are twice as likely to be diagnosed with ALS than civilians. This applies to both those that served during peacetime and wartime.

Researchers have looked for decades for a link between military service and ALS, but none has been found. A 2019 ALS in the Military Report discussed findings from the 1990’s through recent years. It examined those in the military from as early as 1910. After a staggering amount of evidence was found, ALS was finally declared a service-related disease in 2008.

A Unique ALS Experience

With this status, the VA provides support to veterans who completed at least 90 days of consecutive service. This includes financial and medical support. Though there are specific benefits for veterans with ALS, they also have a different experience than most.

Veterans with ALS are in a unique position. They must balance the emotional toll of a devastating disease plus the emotional burden of serving in the military. They must also come to terms with the fact that their service to their country put them at risk for ALS.

Between their distinct emotional experiences and a separate support system through the VA, veterans with ALS are a niche group in our community. Their perspectives require an outlet where they can be fully understood by their fellow former servicemen fighting this disease.

Supporting Veterans with ALS Emotionally

ALS Texas is committed to supporting our veterans with ALS emotionally. In 2020, our team launched a new virtual support group for these veterans and their caregivers. Veterans with ALS across the entire Texas can connect with one another. Providing this community an outlet to discuss their unique ALS experience is crucial.

This group meets every third Tuesday of the month at Noon, and you can find the latest meeting time and register here. In the last year this group has grown tremendously along with its impact.

A Growing Impact on the Community

Many veterans joined this group and found a great sense of community from their peers with ALS. This includes veterans like Ron McAnally who is new to the ALS journey.

Ron served in the U.S. Army from 1974 to 1977. “Some people went to college. I had 3 years of ROTC in high school and joined the Army right out of school,” he shared. Ron’s MOS (Military Occupational Specialty) was being a Voice Radio Operator with the 39th Signal Battalion, 128th Signal Company.

When he came back home his fight was not over as he was diagnosed with ALS in late 2020. The virtual ALS Veteran’s group has been a great resource for Ron and his wife May.

I came into this ALS Veteran Group scared, broken and unsure of what was going to happen to me and my wife. The veterans and some of their spouses in this group, that Steve Morse from the ALS Association of Texas provides for us, are helping me get through the initial impact of being diagnosed with this horrible disease and helping me and my wife to understand the VA benefits and how to get the help we need to live with this disease through the complicated VA system.

When asked how this group impacts this community, Ron shared the following. “Seeing other service members living with and battling this disease is heartbreaking, but the comradery with them is heartwarming, and they always let me know I’m not battling this ALS alone. They truly are my heroes.”

If you’re a Veteran in need of emotional support, we invite you to join this monthly group. If you’re not a veteran and need support, there are groups for you too!

Read about ALS and the military

View the full support groups schedule

Read more about the growth of virtual support groups

Filed Under: Caregivers and Family Tagged With: als community, support groups, veterans with ALS

“I Can” – Trace Craft’s Legacy Powers the Crusade to End ALS

September 21, 2021 by Rhema Jones Leave a Comment

“I Can”, the life motto of Trace Craft, a loving husband, father, and dedicated educator and school administrator. Trace lost his battle with ALS in September of 2020, but today his legacy powers the crusade to end ALS.

“Trace was my best friend, beloved husband, confidant, inspiration, supporter, teacher, and coparent….He was the most amazing man I had ever met…Not a day goes by that I don’t think of him. I miss him dearly!” his wife Jennifer shared in an interview.

Jennifer and Trace met in 1992 and were engaged within a year of meeting each other. Five years later, they married and were for 23 wonderful years. They have two boys, Jaycob and Trevor who are now 14 and 18 respectively. “We were a very close and active family,” Jennifer shared. “Trace, the boys and I loved spending time together outdoors…We also cooked many meals together.”  The Craft family’s love for each other spilled over into their involvement with the local community.

Their family moved to Weatherford in 2013 when Trace accepted a job as an Assistant Principle at Tison Middle School. He was very intentional about building relationships in this role with both his colleagues and with students. Trace started a club for young men in summer of 2017. The Boys to Men club was created to teach young boys how to be responsible and respectable men.

This group grew tremendously with more students and community mentors getting involved each year. Later, he helped found a Girls of Greatness club for young women. As Trace continued to impact his community in Weatherford ISD, he was promoted to Assistant Principal at Weatherford High School.

Their family also involved in the Weatherford community through church at Northside Baptist. Jennifer, who has a career as a pharmacist, noted that she herself viewed her coworkers as extended family. “That’s why we ended up having so much support I think once he was diagnosed was just because all of the connections, we were able to make.”

The Long Road to Diagnosis

Jennifer recalls the long process of coming to Trace’s diagnosis of ALS. She first noticed slurring of his speech in February of 2018. Through a series of doctors’ visits, Trace was misdiagnosed with stress and even discovered a small pituitary tumor in his brain. But none of those explained his declining condition, as he had also started to have problems swallowing certain foods.

After further testing, Trace was officially diagnosed with ALS on August 28, 2018. Jennifer shared how they held hands together in the car on the way home, wondering how to break the news to their two sons. “We told them that evening…It was hard. We all cried and hugged…Our ‘world’ changed. We now had to look at life from a different perspective.”

I Can – My ALS Blog

Trace blogged to document his progression and share his thoughts. In his first post, he shared his newfound purpose on the ALS journey.

“This disease will not define who I am or how I will live my life…My motto is ‘I Can.’ I can be positive. I can persevere in the face of hardship. I can be the best person I can be. I can be the man my God wants me to be. I can be determined. I can make a difference!”

At the end of that blog, Trace invited everyone to join his Walk to Defeat ALS team: Craft’s Crusaders. Jennifer noted how Trace’s favorite Bible verse inspired the team name. “The verse mentions being an ambassador in chains…Crusaders want big change now. They give a voice to the unheard while lobbying for a movement with unbridled passion.”

The Crusade to End ALS

Trace was eager to lead the charge against ALS. “He felt like it was a crusade to not only educate people about what ALS was—but also to try to get everyone on board to try and help find a cure for ALS or to find better treatment for ALS,” Jennifer shared.

The Weatherford community joined Trace on his new crusade. One of those people was Marvin Lofton, who first met Trace back in 2017 when they both worked at Tison Middle School. “His character speaks volumes, his integrity, his respect level for others, and the way that he showed how he cared about others was just something that he modelled and I idolized.” Marvin shared.

Marvin was familiar with ALS because his uncles wife had passed away from the disease the year prior. He joined the walk to honor them both. Marvin noted he was amazed at how resilient Trace was during the Walk.  “I can remember the first time we went on the walk…I’m like there’s no way this dude can be walking with this cane in the hot weather…this is a superhero, a real-life superhero.”

Trace recalled this experience on his blog the next day, “It was a very long three miles! I was not sure I was going to make it, but I pushed through to the end! I finished!…I told myself I was going to finish the entire three miles.” Their team raised over $10,000 to support the ALS Texas mission.

Jennifer described their first walk as both amazing and heartbreaking. “We saw people who walked in memory of loved ones lost, others further in the journey than us and the newly diagnosed like us. It was encouraging to see so many people rally for the same cause with no barriers and motivated by love.”

A Supportive Community

The community not only rallied behind the Craft family at the Walk, but also with their day-to-day life. The congregation at Northside Baptist quickly became helpers on their ALS journey. Gentlemen from the men’s ministry would visit the house to help lift Trace and move him throughout the home. Others would visit to mow the lawn, clean their house, prepare meals, and support them through prayer.

“We could focus on him and not focus on the minutia and monotony of the little things in life than can take you away from spending time with your loved ones. It was really encouraging,” Jennifer shared.

They not only had the support of their Weatherford community,  but also the support of the ALS Texas community. Their family benefited from the virtual support groups and multidisciplinary clinics. Jennifer mentioned how it was so convenient to come to one location for a full team of doctors. “I don’t think we would’ve ever have gotten as far as we did without that kind of multidisciplinary team…And I know part of that is because of the funds and the support that the ALS Association provides to keep those types of clinics going.”

Keeping Trace’s Legacy Alive

Trace lost his battle to ALS in September of 2020. Just seven weeks later, the Craft family participated in the virtual Walk to Defeat ALS. Jennifer noted, “2020 was hard just 7 weeks after Trace’s death, but it also helped me feel connected while I felt so alone.”

It is now nearing the one year since Trace has passed, and his legacy continues to impact the Weatherford community. After his diagnosis, Tison Middle School decided to honor Trace by renaming the Boys to Men club he founded to The Craftsman Club. “His impact on the community in Weatherford is going to be unforgettable and is going to be a legacy that going to live on forever,” Marvin shared.

Trace inspired Marvin to be an ongoing learner and pursue a doctorate degree. Today, he not only honors Trace through that process but also as the team captain of Craft’s Crusaders. “To keep that spirit and legacy alive is the reason why I want to be a part of it, not only in memory of trace but in memory of my aunt, Maddie Connor,” he shared.

We Can Make a Difference

Today, Jennifer and her two sons lean on Trace’s memories to power the crusade to end ALS. “We walk because of the fact that we want to honor those who have already been through this journey, we want to remember them, and help raise funds for those who are going through it now,” Jennifer tearfully shared.

The Walk brings hope to our ALS community, hope for a world without ALS. Jennifer shared, “I hope until then, ALS Texas continues their mission and the Walk is an imperative part of making the mission successful.”

When you join the Walk to Defeat ALS, you support critical research for a cure, to clinics, to virtual support groups. When you walk, you show Texans with ALS and their families that they don’t have to fight this disease alone. We Walk to honor those like Trace Craft who have passed from this disease. We walk to celebrate those who are bravely fighting this disease.

Take any positive word or words you want and put it behind ‘I Can.’ We can make a difference in this world. – Trace Craft

Start Your Walk to Defeat ALS Team

Donate to Support the ALS Texas Mission

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

New Research Update for Proposed ALS Drug Treatment—AMX0035

September 15, 2021 by Rhema Jones Leave a Comment

We’re excited to share another milestone in the search for better drug treatments for ALS. Amylyx announced today that the company will soon submit a New Drug Application (NDA) for AMX0035 to the FDA. The ALS Association has been closely following the development of this treatment, even providing serious funding to propel its development.

Supporting the Development of a New Treatment

Many of these donations were received during the record-breaking ALS Ice Bucket Challenge in 2014. The ALS Association provided a grant of $750,000 for a clinical trial pilot in June 2016. The next month, a $1.46 million grant was provided to the Northeast ALS Consortium (NEALS) to fund the phase 2 CENTAUR clinical trial of AMX0035.

In September 2020, the concluded trial reports were released. They showed promise for this new drug. Those who received this AMX0035 experienced a significant slower progression of ALS than those who received the placebo. In terms of side effects, the drug presented itself as well-tolerated with a better benefit to risk balance. Read more about the CENTAUR phase 2 results here.

The Crucial Role of ALS Advocates

As soon as the results of phase 2 were released for AMX0035, ALS advocates jumped into action. In a team effort with I AM ALS, the ALS Association issued a petition. It urged the FDA and the drug company to make the treatment widely available as soon as possible. When the average lifespan is just 2 – 5 years after an ALS diagnosis, we can’t wait!

That’s just what ALS advocates communicated to the FDA just earlier this year in May. Eight ALS representatives from across the United States hosted a We Can’t Wait Action Meeting with the FDA. The meeting urged the FDA to act swiftly when it comes to approving new drug therapies for those living with ALS.

Our advocates play just as much as a role in the development and approval of new drugs as does the funding provided by generous supporters. With both these functions working in tandem, we can only hope for speedy approvals of future drug treatments.

What Comes Next?

Amylyx is currently conducting a third clinical trial (PHOENIX) of AMX0035; however, they can concurrently submit the NDA. It’s estimated that the drug company will submit this application sometime in the Fall 2021.

Following the application submission, the FDA will determine if they want to grant the new treatment approval. Or, contrarily, the FDA could require an additional study. This review process will take several months from the time of submission. In addition to the United States, Amylyx has also filed for approval of AMX0035 in Canada and the European Union.

In the meantime, the ALS Association plans to put pressure on the FDA to approve this treatment as soon as possible.

Read the full press release

View the we can't wait action meeting

Read the FDA's response to the we can't wait action meeting

Filed Under: News, Research, Research News Tagged With: ALS drug, ALS treatment, Research

A Note from Tonya: No Regrets

September 4, 2021 by Tonya Hitschmann Leave a Comment

I love to read. Over the years, I’ve challenged myself to read more and more books; joining so many Book Clubs, taking on “read a book a month” challenges- you name it.   This summer, I read The Midnight Library by Matt Haig, recommended by the Good Morning America (GMA) Book Club, and I couldn’t put it down!

The Midnight Library is book about a thirty-something woman who is regretful about her life and feels alienated and unneeded in this world. In the depths of her wallowing, she comes across The Midnight Library. In it, each book represents a portal into another variation of what her life could have been if she had chosen differently.

“Every book in here, every book in this entire library-except one-is a version of your life.

 Except One? This one?

Yes.  That one.  It’s something you’ve written without ever having to type a word.

This book is the source of all your problems, and the answer to them, too.  It is called, my dear, The Book of Regrets.”

All of us at one time or another have felt REGRET. Feelings of regret can stem from looking back on past behaviors and decisions and believing that a better outcome may have occurred if a different choice was made.  Maybe you have heard this also referred to as “hindsight bias”?

Regret also shows up when we fail to live in alignment with our authentic selves, as illustrated in this visual from mindfulambition.net

So how do we live our best life without regrets? Is it even possible?

Author Bronnie Ware is an Australian nurse who spent several years working in palliative care, caring for patients in the last 12 weeks of their lives. Through many, many conversations, she heard and came to understand what people truly regret.  Knowing what others have shared as regrets can save us from regretting those exact same things later! During her observations, Bronnie found these common themes that we all should consider doing and/or maybe even doing a little more.

  1. I wish I’d had the courage to live a life true to myself, not the life others expected of me.
  2. I wish I hadn’t worked so hard-especially on work that I don’t enjoy.
  3. I wish I’d had the courage to express my feelings.
  4. I wish I had stayed in touch with my friends.
  5. I wish that I had let myself be happier.

The greatest tragedy of regret is that regret represents a departure from the path of your best life.

In keeping with last month’s theme of More and Less (Fountain and Drain), let’s also explore a couple of things that we should do less of.

  1. Holding On to Grudges/Resentments: Let go.
  2. Caring What Others Think: You likely won’t care a year from now, heck-you probably won’t even care in a few days… Just do it.

What would your midnight library look like? Would your book of regrets be the thickest, heaviest book on the shelf?  You are writing YOUR story today, right now- “Never underestimate the big importance of small things.”

Like most everything in our life, regret-free living is a journey; it takes awareness, curiosity, practice… and a really BIG sense of humor!

No regrets; not even ONE?  Share a funny experience that you regret below, or you can even email me; I’d love to hear from you!

Tonya Hitschmann, Director of Community Programs

Read the September Newsletter

View Our Upcoming Virtual Events

Filed Under: Caregivers and Family Tagged With: als community

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

September 2, 2021 by Catherine Nodurft Leave a Comment

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:

  • Texas Neurology*
  • Houston Methodist*
  • Baylor College of Medicine
  • South Texas VA
  • UT Health San Antonio*
  • Texas Tech El Paso

*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

Filed Under: News Tagged With: ALS Texas, news

Cowtown Affair Hero: Chuck Pettigrew

August 31, 2021 by Katie Gilroy Leave a Comment

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

Diagnosis

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

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

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

Keeping the Faith

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

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

Focusing on the Positives

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

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

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

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

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

Donate to Support Texans with ALS

Filed Under: ALS Hero, Stories

Virtual Groups Are Connecting the ALS Community Like Never Before

August 30, 2021 by Rhema Jones Leave a Comment

When you or a loved one is diagnosed with ALS, your whole world implodes. You find yourself on a traumatic and isolating journey, having to come to terms with this terrible disease. ALS is a club you never want to be in, but you’re not alone.

It is estimated that there are 1,495 people living with ALS in Texas currently. This does not include the many caregivers, young adults, and children who love someone living with ALS. For all these individuals, the emotional burden is something no one should bear alone.

One of the best ways to cope with the emotional struggle of ALS is by connecting with others who understand what you are going through. Finding those people though can be the hard part, and that is where ALS Texas comes in.

We facilitate vital groups to help connect you with other individuals who are battling this disease. Today, we are connected now more than ever before with the rise of virtual support groups.

Virtual Platforms Extend Our Community

ALS Texas moved to virtual support groups last year for the safety of our ALS community amidst the pandemic. This not only allowed our community to stay connected during a difficult year, but also showed us greater possibilities with our support group reach.

In 2020, 1,633 people joined 160 virtual support groups and online presentations and that number is only growing! In the past, in-person connection groups were not always accessible. Some families did not have the available transportation. Others lived too far away to make the travel worth it. And as the disease progresses, leaving the home becomes more difficult.

Our in-person groups were only centralized by city. Now people can connect from the Panhandle to the Valley at the click of a button. Virtual groups allowed niche groups in our ALS community to come together in ways they hadn’t before. Now EVERYONE on the ALS journey can find a group to meet their needs.

A Group for EVERYONE on the ALS Journey

From those living with ALS to their caregivers, to their children, grandchildren, and everyone in between, every member of every ALS family needs a hand to hold as they walk along the ALS journey.

Our virtual groups are an emotional lifeline for the ALS community. Norman Jones, who was diagnosed with ALS in 2018 shared how these groups have impacted his life. “You’re able to express your emotion and your struggle. And then you get advice from others how they handle their struggles.”

Like many ALS families, they benefit from localized ALS Connection Groups that allow anyone affected by ALS to connect with those in their city. Several of those cities also facilitate localized Caregiver Groups. For those who are grieving the loss of a loved one, we host quarterly Bereavement Groups, helping support our community through every step of the ALS journey.

In the last year we have launched SIX new virtual groups with TWO more launching this fall! Each of these groups are geared to serve an emerging need in our community as follows:

Niche Caregiver Groups
  • Women’s Caregiver Group
  • Men’s Caregiver Group
  • Spanish-Speaking Caregiver Group [Launched October 5]
Youth and Children Groups
  • Youth Peer Support Group for Ages 8 – 13
  • Young Adult Peer Support Group
Specialty Groups
  • Veteran’s Group
  • ALS & FTD Group [Launched November 19]

We are constantly looking for ways to better support our ALS community. If you think there is another type of group that might be helpful to others, we would love to hear your ideas! Visit the contact us page to get started.

The Future of Virtual Groups

ALS Texas is here to support your emotional needs on the ALS journey, but it all starts with you. Those living with ALS and caring for those living with ALS have the most wisdom to pass to others who will experience this disease. Take it from ALS family, Mike & Mary Busch, who shared, “When you get further into the journey, you realize you have valuable experience that you can share with others.”

Director of Community Programs, Tonya Hitschmann is excited to see the growing connection group opportunities for our ALS families.

Connection groups are the way out of isolation island! ALS does not define an individual- the power to choose how life is truly lived comes from within. Every ALS Texas connection group creates an environment to meet new friends – those that understand the ALS journey, and those with common interests. Connection groups open the door to meaningful conversations and relationships, help combat loneliness and depression, and create a space for sharing information, experiences, insight, and encouragement.

It is true that we are better together than we are alone. Join a virtual group today!

Filed Under: Caregivers and Family Tagged With: als caregiver, als community, caregivers, family, support groups

How Friends of Rupesh Are Fighting Back Against ALS

August 24, 2021 by Rhema Jones Leave a Comment

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

An Unexpected Diagnosis

Rupesh Kotiya grew up in North Carolina and moved to Dallas, Texas fifteen years ago after spending some time in New York. Siobhan is originally from the UK, and after dating long-distance for a while, she moved to Dallas the same year. Today, they are married with two wonderful boys, Ronan who is 10 and Keaton who is 8.

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

In that moment, everything changed for the Kotiya family. Their sons were only 4 and 2 years old at the time. Rupesh still had a successful career as the VP of Sales in North Texas and Oklahoma for Mainstay Investments, a division of New York Life. Nothing would be the same, but they would not let ALS get the best of them.

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

Overcoming the Challenges of ALS

Despite the challenges of a new diagnosis, Rupesh continued to work full time for two years. He had an impressive career as the VP of Sales, and it was only after it became unsafe for him to drive that he retired.

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

By the time 2020 came around, Rupesh felt his symptoms more in his arms, legs, and hands. It became more difficult for him to walk without a walker and now he uses a motorized wheelchair. In that same year, his doctor recommended that he have a trach placed and he is now on a ventilator 24/7. Even still, Rupesh doesn’t let that stop him from making memories with his family.

Friends of Rupesh and the Fight Against ALS

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

The Kotiya family previously supported other walk events, but after connecting with ALS Texas, they decided to support the organization. “Even though the prognosis is never good and there is no cure, maybe we can be the ones to help find the cure,” Siobhan shared. They joined the Texas Walk to Defeat ALS under the team name, Friends of Rupesh.

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

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

Siobhan hopes that Rupesh’s legacy will have a lasting impact on their two children. Already, their oldest son Ronan, has been inspired by his father. He wrote a book about his father’s ALS journey. “The book is written from the perspective of a 10 year old and aims to provide hope that you can still do many things, e.g., go on holiday, attend parties and most importantly, enjoy life with your loved ones”. What started out as a summer project turned into a fundraiser. Ronan has sold over 600 books and is close to raising almost $7,500 to benefit Texans with ALS.

Ronan isn’t the only one inspired by Rupesh to support the ALS Texas mission. Six years ago, one of Rupesh’s close friends created the “Friends of Rupesh” golf tournament to raise funds for the ALS Texas mission. This year marks the sixth anniversary of this event to honor Rupesh.

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

Why Should You Support ALS Texas?

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

She noted how ALS Texas supports her family with resources like a shower chair. She also discussed how the North Carolina chapter is equipping them with a power wheelchair to use while they travel to the state where Rupesh grew up.

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

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

You can support Texans with ALS like Rupesh this year at the Texas Walk to Defeat ALS! With both virtual and in-person options, you can walk YOUR WAY! Register in the city nearest to you and walk wherever you want on Saturday, October 30. Learn more at alstexas.org/walk. Together we will create a world without ALS!

Start Your Walk to Defeat ALS Team

Donate to Support the ALS Texas Mission

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

Advancing Research: The HEALEY ALS Platform Trial

August 16, 2021 by Catherine Nodurft Leave a Comment

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

Filed Under: Research, Research News Tagged With: ALS drug, ALS Research, ALS treatment

  • « Previous Page
  • 1
  • 2
  • 3
  • 4
  • 5
  • 6
  • …
  • 22
  • Next Page »

Find Help

Find Help

Get Involved

ALS Get Involved

Donate

Donate
  • Site Map
  • Privacy Policy
  • Link Policy
  • Contact Us

The ALS Association of Texas | 877.714.0088
All content and works posted on this website are owned and copyrighted by the ALS Association of Texas © 2021


Dallas Office 14555 Dallas Parkway Suite 100-219, Dallas, Texas 75254
San Antonio Office We're working from home! Please send mail to the Dallas office.
Austin Office 2301 W Anderson Lane, Austin, TX, 78757
Houston Office 4201 Main Street, Suite 200-142, Houston, TX 77002