ALS Texas

How ALS Texas Supports the Emotional Needs of Our Heroic Veterans

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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

Virtual Groups Are Connecting the ALS Community Like Never Before

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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
Youth and Children Groups
  • Youth Peer Support Group for Ages 8 – 13
  • Young Adult Peer Support Group
Specialty Groups

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!

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

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

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

Even from a young age, Norman’s grandmother instilled in him the importance of faith. It kept him strong when he moved to the U.S. from Jamaica as a child, and it led him to become a Chaplain in the Army. Norman served in the army for 32 years, 24 of those being as Chaplain, before retiring in 2016.

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

Today, Norman and Dee, his wife of 41 years, live in San Antonio. They have two daughters—one who lives with them at home and the second who recently got married and is teaching in Korea.

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

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

During this time, virtual support groups kept the Jones family connected with the ALS community. “You’re able to express your emotion and your struggle. And then you get advice from others how they handle their struggles,” Norman shared.

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

Besides the hope of finding a cure, Norman, and Dee hope that researchers will discover ways to detect ALS early and provide treatments to improve quality and length of life with the disease. “I have a lot of hope,” Norman shared.

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

Messy Motherhood: Jennifer Mercz’s Story

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I felt I was falling short in a lot of places. You can’t have it all together.

In January 2019, after a year of doctor’s appointments, increased symptoms, referrals and second opinions, Jack Mercz was diagnosed with ALS at the age of 53.  In a recent ALS Texas interview with his widow Jennifer Mercz, Jennifer shared “our whole relationship pretty much changed in a day.”  Jennifer and Jack had a then two-year old son, and Jennifer added, “I had been with my husband for 10 years and suddenly found myself not only caring for my husband but also my young child.” She recalled moments that included putting her son in the bath and helping her husband in the shower at the same time, and at the end of the day being too tired to even take a shower herself.

Jack and his family battled ALS for more than a year- and amid the COVID pandemic as well, until Jack passed away in September 2020. “Walking on this journey was one of the most challenging things my family has ever endured,” shared Jennifer. Yet, she is ready to share her experience with others. “This community and support are lifechanging; to have support and know that you are not completely alone.  Me sharing…if this helps one person that’s good enough for me.”

Jennifer shared that Jack was not very accepting of any kind of help; he wanted to be stronger in every way and help Jennifer at home when he was not traveling for work. Frustration over his declining physical abilities and strength led to anger and depression and Jennifer shared that she “became very standoffish emotionally-clinical with him.” While Jennifer did reach out to ALS Texas and the community as much as she could, she added that “things were moving so quickly that I didn’t seem to have time” to do more-such as accessing our ALS Texas equipment loan program sooner. “The ALS Association delivered a Hoyer lift to our home-it was great, and we needed it.  Jack was able to get up (after weeks of being in bed) and sit on the couch with our son.”  He told me that he wished we would have had that [Hoyer lift} earlier.  In retrospect, she added that she would do things differently in making some “executive decisions” about Jack’s needs; equipment and care that would have also benefitted her.  She urges all family caregivers to seek help with caregiving if at all possible-from anyone who is able to help, including friends and family members, and when someone says, “Hey, do you need help?” the answer is “YES! Here’s how you can help me.”

You put yourself on the back burner. Get help, even if just for an hour, so you can eat, shower, and take a deep breath. Support, from my husband’s perspective, was not a priority, but I needed it… 20-30 minutes for yourself is the most important.

ALS Texas offers programming and support for caregivers of all ages. You know when you receive safety instructions before traveling by air, and the flight attendant tells you that in the event of an emergency, you should put the oxygen mask on yourself before helping those around you? They say this because you will not be any good to those who depend on you if you cannot breathe yourself. This applies in caregiving too, and it is very important to remember.

Not only do we have Brewed Awakenings, our caregiver group just for women, or one of our many Connection (Support) Groups throughout the state for both those living with ALS and their caregivers, but we also host workshops such as Running on Empty: Burnout and Compassion Fatigue, The Cost of Caregiving.  Often, caregivers like Jennifer share that they just do not have time to attend any of these. In reality, you cannot afford NOT to.

Jennifer was dealing with so many different emotions, and candidly shares that she was “in such a dark place.  Added to all of this was an unneeded dose of Mom Guilt. Mom guilt is the feeling of guilt, doubt, anxiety, or uncertainty experienced by mothers when they worry that they are failing or falling short of expectations in some way.  Being a parent is one of the most difficult jobs in the world and does not come with a handbook, and surely not a handbook for when ALS enters your life. No book, pamphlet, workshop, or conversation can truly prepare you for what you are about to experience.  Jennifer recalled once giving her son a bag of chips and then going to care for Jack.  “When I returned the bag was laying there empty, and I thought to myself, I hope my son ate those and not the dog. At times that was all that I had time for.”

Pay more attention to what is real and less attention to what you feel. Feelings can trick you in to thinking you are the worst mom out there.  Being level- headed and rational with your thinking will help you to see what is really going on.

When asked how she and their now almost four-year old son are doing today, Jennifer replied, “Grief is a tricky thing. Overall, he is good, and I’m touch and go.  Today, I’m good.”  ALS Texas walks alongside our families throughout every phase of the disease and we also have many bereavement resources for adults, youth, and children, and hosts a quarterly Bereavement Group.

Learn More about our Caregiver Programs

View Upcoming Support Groups

John’s Story: Give Joy

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Gratitude is what guides John and Jill Lay’s life. Everything from the life they’ve built together and their children and grandchildren, to the simpler things like University of Texas football games and sunsets on the farm bring them joy.

When John received the devastating diagnosis of ALS in 2019, he didn’t let that steal his joy. Instead, he and Jill started searching for resources. That’s when they discovered the ALS Association of Texas and the ALS community that would help them through this journey. It has been an uplifting experience for them to join a community of other families living with ALS, while collecting knowledge and receiving support.

John and Jill continue to live their lives to the fullest, despite the challenges of ALS. In fact, John declared the year of his diagnosis the best year of his life. “It might sound strange, but I am grateful,” he shared, “I’ve had the opportunity to see my children grow up, my family is healthy and happy, and I have the support of an incredible community.”

As the disease progresses and John continues to experience symptoms, he and Jill find comfort knowing they are not alone on this journey and that they can reach out to the team at ALS Association of Texas anytime for guidance and resources.  ALS Texas provides crucial programs to them and others on the ALS journey.

“That is the reason I am so excited to support ALS Texas – for what they do to help people on this journey with this disease,” John shared.

Although a cure may not be available for John in his lifetime, he and Jill are hopeful that in the future, there will be a cure for others diagnosed with ALS. In the meantime, John and Jill continue to live every day with gratitude and joy.

Because of you they have hope for a world without ALS.

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Young Caregivers in Texas Aren’t Alone

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We must never underestimate the strength that caregivers have for providing support to those who need it most, nor the toll that it takes upon them both emotionally and physically.

Last year for National Family Caregivers Month, the ALS Association of Texas focused on recognizing, supporting and empowering family caregivers. In this third and final installment to our three-part caregiver series, let’s dive into a caregiver perspective that’s frequently overlooked.

We mostly hear of advanced illnesses throwing spouses and life partners into the primary caregiver role for their loved ones. However, we rarely acknowledge the many young adults, youth and children that are providing care for a parent.

Approximately 1.4 million children and youth from ages 8 to 18 in the U.S. are familiar caregivers of a family member. They support both activities of daily living (ADLs) and instrumental activities of daily living (IADLs). This includes managing complex assistive devices, feeding, bathing and toileting, among other activities.

In Texas, we know that there are more than 2,500 youth and children involved in the ALS experience.

The ALS Association of Texas worked in the last year to developing educational resources and programming for young caregivers involved in the ALS journey. During this process, a phenomenal group of young leaders emerged, and just like ALS, they don’t stop. Abby Estrada, LCSW, Jothi Gupta, Connor Hadley and Gabriel Poveda all know first-hand what it’s like caring for a loved one with ALS, specifically their fathers. Keep reading to hear more about their stories:

Abby Estrada, LCSW

Abby Estrada’s father was received his ALS diagnosis while she was in high school. She helped provide much of his care until he passed away while she was in college. Abby took her experience and passion for helping others into her career as a licensed clinical social worker in Texas. Abby heavily involves herself in our fAmiLy talkS workshops and is looking forward to also being a therapeutic resource for our ALS Texas community as a LCSW.

When it comes to those difficult but crucial talks about ALS, Abby shared, “Keep the conversation ongoing with your children. Check in with them, especially at times when ALS progresses and your ‘new normal’ is changing. Listen—perhaps the best thing you can do is be there and listen. Your children may be angry, confused or sad. Hear them and allow them their feelings.”

Jothi Gupta

17-year-old Jothi Gupta launched the It’s Okay to Not Be Okay: A Closer Look at Family Illness and How to Navigate It podcast earlier this year. Perseverance is also way of life for her family, who as a whole, has shared their poignant journey with ALS with our community. Jothi is also the editor-in-chief of her school newspaper, a leader on her school’s debate team, and co-founder (along with her sister) of the RG Foundation for ALS Awareness.

“This is such a painful disease to watch slowly take my Dad away and we want to do everything in our power to fight back,” she shared. Jothi also noted that she is passionate about resiliency and is looking forward to connecting with and supporting other teen caregivers in Texas.

Connor Hadley

Connor Hadley was a pre-teen when his Dad, Collin, was diagnosed with ALS. He since has watched ALS progress and rob his Dad of so much. Now at the age of 17, virtually every day brings a new normal.

The Hadley family believes in making each day count.  Connor just attended his last youth church camp and loves playing football. He still puts his experience as young caregiver into action. Connor  believes he has a gift of helping people do the right thing and wants to support youth and children in Texas. He added that while he is a teenager knocking on the door of adulthood, he was much younger when his Dad was first diagnosed with ALS, and he believes he can really relate to that age group.

Gabriel Poveda

Gabriel Poveda is wise beyond his 20 years and has likely experienced more than just about anyone in his sophomore class at UT Austin.  This year’s National Family Caregivers month theme is Caregiving Around the Clock, and Gabriel can certainly attest to this being true.

“My Dad was diagnosed November 14, 2017. I had just turned 17 as well. From 2017 to August of 2019, I was very involved in my father’s day-to-day caregiving,.” Gabriel Shared. At the time, he was still in high school. “I had to make sure that I got home on time so I could give him is IsoSource feedings. I had early release at school, and got home around 1:00, and would stay with my Dad until about 6:00pm when my Mom got home from work, and then she would take over.”

Young caregivers experience an impact on their friendships, relationships, clubs, etc., Gabriel added, “You forget about a lot of things; emotions foremost among them, but also other relationships, and other bits of everyday life that you previously thought were important.”

Gabriel learned about a student-led program at UT Austin which pairs young people with senior citizens for weekly/bi-weekly chats. “It’s an inspiring group of my peers and it got me thinking: why not for ALS? It would require, time, money, and most importantly people, but I believe it is plausible.”

So what’s next for young caregivers?

We’re taking Gabriel’s feedback to heart! ALS Texas has launched online peer support groups for young caregivers involved in the ALS journey. The inspiring young people above will co-facilitate this group, continuing to change the world one day at a time. Each of them want to connect with other young people who feels isolated and alone. Young caregivers in Texas aren’t alone.

Gabriel extends this invitation to all of our ALS Texas young caregivers, “I encourage you to reach out… we’re starting online peer support groups, and we’d like for you to be a part of it.”

View the virtual support groups schedule

Wife, Partner, and Caregiver – The Balancing Act

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The ALS Association of Texas is dedicated to recognizing, empowering, and supporting family caregivers throughout Texas. Our hope is to share the different perspectives of the ALS experience and walk alongside every family member throughout the journey—the journey that is a marathon and not a sprint.

Did you know that in the United States, about one in 10 caregivers are providing care for their spouse? Stamina and success as a spousal caregiver mean knowing when to ask for help, finding time for yourself, and making peace with your partner. Now you have all the answers. That’s the end of this story, right? Not. Even. Close. All of the things mentioned above are so much easier said than done.

“Many people will say that they will do as much as they can until they can’t anymore, and that’s not good for anyone,” says Dr. Jacobs, author of Meditations for Caregivers: Practical, Emotional, and Spiritual Support for You and Your Family. Friends and other family members are often more willing to help than you think, so don’t steal their chance to be a blessing! (Know when to ask for help)

In visiting with families throughout the state, I’ve asked many wives this question. “What do you need most that ALS Texas is not currently providing?” More times than I can count, the answer has been, “What I need, you can’t help with. I am no longer a wife; I’m a caregiver, and you can’t fix that.” While it’s true that ALS Texas can’t change that, we can help provide more education, programming and support on how to take control of that balancing act and not lose what you value most in your marriage.

That ultimately starts with MAKING time for self-care! Start with just five minutes a day and add a minute or two as you can; even if you have to go into a closet to breathe deeply, read, meditate, and have some alone time, those few minutes can make a huge difference. One of the best pieces of feedback I’ve heard from a wife/caregiver is, “He can be very dependent on me, but I tell him that I need some uninterrupted time for myself.” (Finding time for yourself)

The Gupta Family

In September, we were honored to join the Gupta family from Plano, TX as they invited our ALS Texas community to walk alongside them in their genuine and very poignant journey with ALS. During the Gupta’s Family Talks special event, we listened as Hema Gupta emotionally shared, “I went from being a wife…to a caretaker. I think I….I honestly don’t think about any of that stuff, because it’s too hard, and I refuse, I refuse to let to let this…ALS, be the defining of the family.”

In her recent column We Are Both Patients, Kristen Neva shared, “I never imagined I would be providing this type of care for my middle-aged husband.” She adds that caregiving for her husband who has ALS, is stressful for them both, but their strong relationship helps them through the tough times.

“Spouses need to pause and recognize that their marriage has changed completely and may never return to the way it was,” says Dr. Denholm, PhD, a psychologist in West Palm Beach, FL, and author of The Caregiving Wife’s Handbook. “If the sick spouse is still able to communicate, I always recommend that couples talk about the changing relationship openly and honestly, and as soon after it starts changing as possible.” (Making peace with your partner)

As a caregiver, do you and your loved one living with ALS have an agreed-upon signal to let each other know it’s time for you to take a break? Many spouse caregivers struggle with the “G” word – guilt – and on a daily basis; they feel guilty for doing too little or too much. It shouldn’t be wrong to say, “I am your wife, above all, and not only a caregiver now.” Many spouse caregivers throw themselves into their new role so wholeheartedly that they neglect their own care or forget to consider how their spouse might be able to contribute.

Cultivate healthy communication as a practice. Being able to talk to your spouse candidly is important for every marriage, but it’s especially crucial for couples in which one person is taking care of the other. You may need to have delicate or difficult conversations about everything from toileting to the changing nature of your intimacy; the key is to not avoid those conversations. After all, caregiving is a partnership between the giver of care and the receiver of care. In practicing good communication as a husband and wife, you continue to focus on the art of adaptability. Experiment, think outside the box, and be creative in adapting to new normals – bring sexy back!

Knowing when to ask for help, finding time for yourself, and making peace with your partner are some of the biggest secrets to success in the balancing act of the wife, partner, and caregiver marathon. If you’re looking for ways to build these practices into your family’s ALS journey, our ALS Texas Caregiver Groups are a tremendous resource for spousal caregivers. We even offer a dedicated group for women, Brewed Awakenings.

Join a Virtual Support Group

Support Plays Important Role in Living with ALS

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By Ben Stephens

Ben and his family

Like most people with ALS, I’d noticed some changes long before the diagnosis came. In August 2013, I began having difficulty buttoning my shirt. After seeing three different neurologists, receiving an incorrect diagnosis of multifocal motor neuropathy, and a series of tests like a spinal tap and MRI, I finally received a diagnosis of ALS in December 2014.

ALS has forced a lot of changes on my life. As an estate planning and probate attorney, I have a number of clients who rely on me. After my diagnosis, I hired an associate, which allows me to continue to work while living with the realities of ALS. I quit driving about two years ago, and I’ve learned to work remotely. I had to sell my house because of the stairs, and my family and I moved to a duplex. ALS has affected almost every area of my life.

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Offering Help, Hope, and a Voice to those Living with ALS

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By John Quinn

John and his family

Like many people with ALS, I first noticed symptoms several months before I was diagnosed. In December 2015, I was dropping my right foot when I walked and began fatiguing more easily than normal.

I went to multiple doctors and finally saw a neurologist who suspected I had ALS, and he recommended I go to Houston Methodist hospital. In May 2016, I went through a series of tests for two days at Houston Methodist hospital and was given an ALS diagnosis.

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ALS Texas: 2016 By the Numbers

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At ALS Texas, we’re dedicated to serving people with ALS in any way we can. That includes running clinics, hosting support groups, providing grants, loaning equipment, funding research, educating people about ALS, and much more.

It’s only through the support of people like you that we’re able to do all this, and we want to thank you for helping make the past year a success. In 2016, ALS Texas provided more services to more people—about 25% more, compared to 2015. Here’s a look at the numbers that help show what we were able to accomplish:

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