ALS Texas

2021 Under Ballou Skies Hero: Sarah Durand

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This year, we are honoring Sarah Durand as our ALS hero during the Under Ballou Skies Golf Classic & Party. In the last year, Sarah has not only had to navigate life during a pandemic, but also an ALS diagnosis.

Sarah currently resides in Austin, where she has lived for the last 18 years. She built a career in massage therapy, working for two different resorts. In September of 2019, Sarah started to notice that one of her fingers would not fully extend. She thought it might be the onset of arthritis, a common experience among massage therapists.

Once the COVID-19 pandemic began, resorts closed, giving Sarah several months off, yet she saw no improvement with her finger. She went to a Rheumatologist and was diagnosed with rheumatoid arthritis in early 2020 and started doing injection treatments. However, after three months of injections, her condition continued to worsen.

“I noticed in my yoga class that I couldn’t balance on my right leg anymore,” Sarah shared. After visiting with a neurologist, Sarah was diagnosed with ALS in September 2020. She even went to two other doctors for a second opinion—both coming to the same conclusion: ALS.

Getting Connected with the ALS Community

Sarah connected with the ALS Association of Texas shortly after her diagnosis. She already visited a multidisciplinary ALS clinic once and plans to go twice a year for routine care. And while she may still be in the early stages of the disease, Sarah knows that ALS Texas is just a phone call away for everything from no-cost equipment loans to support groups!

ALS can affect people of any age and gender, and the average age of diagnosis is 55, but at only 39 years old, Sarah hopes to connect with younger people with ALS, especially other women. “I recently have found a couple of girls that I’ve started talking with and that’s been a true blessing, having somebody that understands what I’m going through.”

A New Normal

In the meantime, Sarah is finding a new normal, from adjusting her home to make it accessible to applying for disability. “Once I get adjusted to one thing, I lose control of something else.”

Sarah has even had to changed how she spends her free time. “A lot of my hobbies, I can’t do them anymore,” she shared. “I loved to go hiking and loved to go running. I have two paddle boards in my backyard that I stare at all the time and can’t use them, you know?”

Sarah finds joy in time spent with her boyfriend, Danny, her friends, or her two dogs and cat. She cheerfully shared how Danny is incredibly supportive of her ALS journey, “He’s really been with me day in and day out.” From cooking together, to enjoying a relaxing day at the pool, Sarah and Danny are making the most of every moment they have together.

Fighting to Raise Awareness

Sarah is passionate about raising awareness for ALS. “I had never even heard of ALS before I got diagnosed,” she shared. And finding a cure for ALS starts with people seeing the need for a cure for ALS.

Before being diagnosed with ALS, Sarah ran races and supported fundraising events for breast cancer research. Her mom had fought the disease, which made it a cause dear to her heart. However, she noted that there is not the same kind of widespread awareness surrounding ALS. “I never see anything for ALS like pins, hats, clothing”.

Sarah hopes soon that more doors will open to host fundraising events to awareness efforts and critical research for a cure and reliable treatments. However, there is an exciting way that you can support Texans with ALS like Sarah from the comfort of your own home!

Supporting Texans with ALS at Home

This year for Under Ballou Skies, you can support Texans with ALS from the comfort of your own home with our Party with a Purpose basket. Join us on May 13 for a virtual party, where we’ll honor Sarah and support Texans with ALS with an auction. Each basket includes boutique picnic provisions and items to make a Tito’s signature cocktail for you and your guests!

Secure Your Party with a Purpose Basket Today

Support Texans with ALS

 

Telehealth Coverage for Speech Therapy Services Extended through the Duration of the COVID-19 Pandemic

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In a huge win for the ALS community, the Centers for Medicare & Medicaid Services (CMS) expanded telehealth coverage for speech therapist services for the duration of the COVID-19 pandemic. This victory was made possible through the collaboration of the ALS Association and the American-Speech-Language-Hearing Association (ASHA).

Kathleen Sheehan, Vice President of Public Policy at the ALS Association shared, “These changes will allow speech therapists at ALS clinics and throughout the country to continue treating patients in the safety of their homes and cover services that can be done effectively using telehealth.”

Now there are FIVE critical services available via telehealth for people with ALS including clinical care for swallowing function and evaluations for speech-generating devices. These services are critical to people living with ALS and the day-to-day challenges they face.­

Prior to the COVID-19 pandemic, telemedicine was not widely available because of virtual platform restrictions and insurance barriers. Widespread access to telehealth became an urgent need for those with ALS and other vulnerable groups as the pandemic progressed and clinics closed.

The ALS community, ALS Association and other disease organizations advocated for new guidelines to remove the barriers to telemedicine. Because of this, Texans with ALS were able to access care across the state that was not possible before COVID.  But the fight is not over yet.

These guidelines will expire at the end of the current public health emergency, estimated to last through the end of 2021. However, the ALS Association is dedicated to continuing the fight for permanent expansion of these guidelines to provide access to telehealth services post-COVID-19. This is just one of several public policy priorities for 2021.

We have recently seen promising development on Capitol Hill in the progression of this fight. The ALS Association endorsed the Telehealth Modernization Act through written testimony in March. This act would make telehealth access permanent for Medicare beneficiaries. This would not only impact access to remote care, but also access to remote clinical trials in the search for a cure for ALS. Read the full announcement here.

View our 2021 Pulblic Policy Priorities

View our 2021 Pulblic Policy Priorities

A Note from Tonya: Bird’s Nest on the Ground

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With each of our monthly newsletters, our goal is to truly engage with each of our families- to share the latest ALS news, ways to connect with each other and our team, and opportunities to learn more about living with ALS. Along the way, I’ll be sharing encouraging words for our ALS Texas community. Starting in April, we’ve decided to share these notes with everyone on our blog, because let’s be real. We all could use a little extra encouragement and perspective on the journey and in a life lived PurposeFULLy! 

I have shared before that Spring is my absolute favorite time of the year. It’s a beautiful season of new beginnings, growth and change. I love hearing the birds sing in the morning and watching them build and prepare their nests. I even hang flowering baskets on the patio and bird houses in the trees to make things easier- and to entice them in to making our backyard home.

This made me think of the phrase “bird’s nest on the ground”.  It refers to something being very easy and not at all a challenge-offering at least some advantage with little effort or risk.  Do you ever seek the bird’s nest on the ground-especially when it comes to FEAR and uncertainty? While the temporary fix may seem easier in the moment, it often creeps back up again until we put on our shield and truly face FEAR, rise above it and through it, and begin the much brighter journey of courage and peace. We can’t do that alone, and our monthly newsletter shares just some of the ways that you connect with others and face your fears within our ALS Texas community, and with a whole lot of encouragement and support along the way.

Tonya Hitschmann, Director of Community Programs

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Go! Go! Go! – Bruce Gilliam’s One Day Story

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Don’t let the fear of striking out keep you from playing the game.

Bruce Gilliam of Lubbock knows a thing or two about playing ball-specifically men’s softball. Not only did he play ball for many years, but the men’s Over 50/Senior Tournament Team that he now coaches-Team LBK, just last month participated in the invitation only Tournament of Champions in Florida. Before an invitation can be extended to this tournament, a team must have also won a tournament in the U.S. Team LBK-with the LBK being a nod to their hometown of Lubbock, TX, won the state tournament in Grapevine, TX in August 2020, and came in second place in a tournament in Phoenix, AZ just before Thanksgiving 2020.

Bruce, a younger “senior” at age 57, was diagnosed with ALS in July 2019. Being the youngest of seven children, he has always been a scrappy fighter and not one to let life’s curveballs keep him down. “I used to be very competitive playing ball, and once I couldn’t play anymore they asked me to coach.”

He adds that he has known some of the players on his team for a very long time, and that when they were younger, they qualified to the World Series in Florida three times.  During games, Bruce takes his scooter on the field just outside the dugout and the umpires let him park there to keep score, coach, and discuss game rules.  He added that most umpires also ask a player to stand in front of him to help protect Bruce from both hit and thrown balls. In January 2021, Team LBK took home a second-place trophy.

“I did not want to give up softball, and yet it is a JOB coaching-organizing and setting up tournaments.”  Even thought it is a lot of work, Bruce is no stranger to that concept. “I’ve always been a Go, go, go! person.”  Bruce added that one of his former managers that he has kept in touch with has said that Bruce is “the hardest working man I’ve ever known.” Before retiring, Bruce was the manager of an appliance parts supply store and fixed appliances after hours. He still enjoys working on those appliances when he is able to do so- “dryers are easier because they are lighter,” and his wife (Raquel) can help lift them if needed.  Bruce has lost some grip and strength in his right hand that has forced him to learn to use his left hand a lot more.

Sometimes the only thing that is fair in life is the ball hit between first and third.

In addition to his passion for softball and repairing the things that he can-Bruce loves his rescued pup, Mia, restoring vintage cars, and he is also an avid sportsman who enjoys fishing and bird hunting.

Bruce and his wife, Raquel, have a blended family of four grown children, and six grandchildren. Raquel is still working full-time in banking industry, and Bruce-well, you’ve gotten a glimpse in to his life and how he is making every day count.  This is one of the reasons that Bruce Gilliam was the first feature in our new ALS Texas “One Day….” Series. Watch his interview on Facebook!

The “One Day….” series helps remind all of us to slow down and stop looking forward to or preparing for the next thing, and to instead enjoy what we have right in front of us-to making these moments count.  Sometimes that might mean to make them meaningful, sometimes it might mean to make them memorable-and we want to help make that happen.

Do you have a memorable moment to share?  We want to hear about it!  Send your “One Day…” stories to Tonya. Our lives tell a story of the journey of our days.  One Day can be full of thousands of moments, and every day… is a gift; don’t send it back unopened. One Day…there will be a cure for ALS.

2021 Shoot Out ALS Hero: Stacy Brown

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Embrace everybody and every day, enjoy every moment and say what you need to say to those around you. That is the essence of #JustLiving. Stacy Brown and his family developed this philosophy following his ALS diagnosis. This year, we have the pleasure of honoring Stacy Brown as the 2021 Shoot Out ALS Hero.

Stacy was raised by amazing parents and grew up in a small town in northeastern Arkansas. He moved to New Orleans the day after he graduated from high school.  After attending LSU and graduating from Centenary College he moved to Texas, and has lived in Houston since the late ’80s. There he met his future wife, Kellye.

Stacy and Kellye first met during a Sunday school class in Houston. He was the president of the class and she was there with a group of friends. After leaving the class, Kellye recalls telling her friends, “I’m going to marry that man one day.” And marry him she did.

Following five years of building a friendship, Stacy finally asked Kellye to be his girlfriend. They were engaged after three months of dating and married six months after that in 1995. A few years later, they had  boy/girl twins, Emily and Scott.  Today, Kellye and Stacy have been happily married for 25 years and still call Houston home.

The Beginning of an ALS Journey

Stacy started to experience slurred speech in 2020. He and Kellye thought he may have had a stroke. They decided to consult with a friend who was a neurologist at Houston Methodist to be sure. Through a process of elimination, Stacy received a formal diagnosis of bulbar onset ALS in October 2020. Bulbar onset ALS is when symptoms first affect the muscles of the face and throat.

As Stacy’s symptoms progressed, speaking became increasingly difficult, and he decided to retire in December 2020 after a successful career in sales and marketing.  While working, Stacy used those skills to serve others. “I’ve always enjoyed doing philanthropic work. It was a great way to give back to the community,” Stacy shared. He is a former Chairman of the Rotary Smith Award and a member of the Lomdardi Award Committee and is currently a Vice Chairman of the Wine Committee of the Houston Livestock Show & Rodeo as well as serving on the World’s Championship Bar-B-Que Committee for over 25 years.

Joining the Fight Against ALS

“I was shocked to find out that there is no cure and that there are very few treatments,” Stacy shared. While searching for organizations that supported the fight against ALS, he came across the ALS Association of Texas. They were then able to get connected with resources, including one of our multidisciplinary clinics in Houston.

“We have been utterly blown away by the level of care afforded to, not only the ALS patients, but their caregivers as well,” Stacy noted about the ALS clinics. “Seeing everybody in one day is incredibly helpful. We must increase funding in order to provide local ALS clinics across the state.”

Shortly after getting connected with the resources at ALS Texas, Stacy looked for ways to impact the organization himself. “From my previous philanthropic work, I had skills that could be utilized for raising money and awareness.” After connecting with an ALS Texas board member, Stacy joined the ALS Texas Regional Leadership Council.

We must increase fundraising for additional research in hopes of curing ALS so others don’t have to go through this.

Foundation of Faith

Kellye noted that Stacy’s faith plays a key role in his desire to serve others. “Regardless of what we are experiencing, God teaches us that our focus is not inward, but outward. Faith has always been and continues to be, the driving force in our family. It will sustain us through our ALS journey.”

Knowing that his life is being cut short by this terrible disease, Stacy makes it a habit of expressing the important thoughts and feelings that he may or may not have said to his friends and family.

Our love for others is our grateful response to the love God first demonstrated to us. 1 John 4:19

In the short few months since Stacy’s diagnosis, Kellye said “So many others affected by an ALS diagnosis have come into our lives and I can only attribute that to God’s providential care.”

#JustLiving

Before the ALS diagnosis, Stacy was blessed with many opportunities. He has traveled extensively, become a sommelier, played guitar in bands, wrote and published music, and got his sailing license. However, his biggest accomplishment is his twins, Emily and Scott, who are both college graduates and are currently working in the Houston area.  They are his pride and joy.  Today, he is not letting ALS keep him from enjoying the little things. “I’m taking this time to just live and enjoy what I’ve been blessed with, mainly my family and my friends.”

He and his family coined #JustLiving, a philosophy to guide them through the ALS journey and beyond. The essence of #JustLiving is to embrace everybody, experience every day, enjoy every moment, and say what you need to say. “We’re going to live every day as fully as we can until we can’t,” Kellye tearfully shared.

Encouragement for Those on The ALS Journey

The ALS journey can feel isolating, so it is important to stay connected with others. “Surround yourself with a group of people, family, friends and experts who can support you,” Kellye suggested for others on this path. The ALS Association of Texas provides a network of support from ALS clinics to support groups.

“Without the ALS Association, we wouldn’t have a pathway to direct dollars to research and clinical care, and that’s a big deal!” Stacy shared about ALS Texas. He is both hopeful for a cure and hopeful for new treatments to improve the quality of life.

You can support Texans with ALS like Stacy Brown by joining us for the Sixth Annual Shoot Out ALS Sporting Clay Shoot in Houston, Texas on March 23, 2021. Shooting enthusiasts will participate in an afternoon clay shoot followed by cocktails, dinner, and awards at the Greater Houston Sports Club.

Not a shooter? No problem! Dinner-only tickets are available for those who do not want to shoot, but still want to support the fight against ALS.

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ALS Association of Texas Supports Texans with ALS Following the Winter Storm

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Last week, Texas experienced a once-in-a-lifetime winter storm that left millions of Texans without power and clean water. We are thankful that now the worst of the severe winter weather has move on through Texas and hopefully will not return.

The challenges of losing power and water created significant challenges for our ALS Texas family.  If you’re a Texan with ALS that experienced any significant challenges related to this disaster that were and are unsustainable, we are here to help. We have access to a disaster relief fund to help our ALS community with unplanned expenses as a result of the disaster, including but not limited to: 

  • Purchase of generators or other back-up power sources
  • Plumbing issues (busted pipes, flooding)
  • Relocation expenses as a result of power outage (hotel, fuel)
  • Other special equipment you purchased that you would not have purchased outside of the given situation

To apply for assistance, please contact the ALS Association of Texas team member in your area (listed below).

We cannot guarantee that we can address every need, but we will try to help as much as resources allow.  

One Day… A New Series to Celebrate Our ALS Texas Family

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A lot can happen in one day.

For many of us, our days feel like a blur of appointments and tasks to be completed. We often do only the bare minimum of what we need to stay afloat. Other days, things go our way, we are checking things off of our lists, we receive good news, we carry out or witness good deeds, and we feel like a superhero.

Sometimes we think, “I’ve got this!”, and feel like we are walking on sunshine. Then the clouds move in, and there are days we feel like we have never been more lost and without any sense of direction.

Simon Sinek teaches us to have an infinite mindset. “In an infinite game, there is no winning. There is only ahead and behind.” He challenges us to change our narratives and to stop labeling days as either good or bad. Instead, we should think of days as either ahead or behind. It reminds us that life is a journey of our days that some might even compare it to an amazing race. We tend to forget that each and every day is more than just that single time stamp. Each is made up of many different moments.

Nobel Prize-winning scientist, Daniel Kahneman, suggests that we experience approximately 20,000 moments every day. A moment is defined as a few seconds in which our brain records an experience. These moments are captured as positive, negative, or plain neutral. Rarely do we remember neutral moments, but instead we remember the positive and negative moments.

“Each day… is a gift; don’t send it back unopened.”- Unknown

This quote reminds us to slow down and stop focusing on the next thing and to instead enjoy what we have right in front of us, to making these moments count. That might mean working to make those moments memorable and we want to help that happen.

Beginning in February 2021, The ALS Association of Texas will launch a new five-minute interview series entitled, “One Day…” We will visit one moment of One Day in the life of members of our ALS Texas community and celebrate our ALS Texas family. Do you have a memorable moment to share?  We want to hear about it!

Send your One Day stories to Tonya. Maybe it’s something like a “Walk and Roll” that one of our ALS families told us about. A wife and her husband with ALS take an afternoon stroll together: hers is a walk, and he puts some miles on his power wheelchair! They get fresh air, sunshine, and they do it together. Now that is a moment to capture!

Together, we will savor the sweetness and celebrate victories big and small, friendships, creative approaches to living life to the fullest, family, and just plain good stuff. We will lock arms not only in our fight against ALS, but in creating more ahead days than behind, and in our determination and hope that there will One Day be a world without ALS.

ALL in for ALS 2021 Hero: Nick Sloan

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Wherever our place is in all of this, that’s where I want to go. – Nick Sloan

As a husband, father, and Marine Veteran, Nick Sloan understands the value of service to one’s family, country, and community. Despite receiving a devastating ALS diagnosis in September 2020, he continues to build a legacy that will last far beyond his lifetime. For this year’s 2021 ALL in for ALS Poker Tournament, we are honoring Nick Sloan as our ALS Hero.

Discovering a Passion for Service

Nick was born and raised in Texas and married his high school sweetheart, Shanda. Before their marriage and after graduating high school, Shanda attended college at Baylor University in Waco and Nick enlisted in the Marine Corps.

Nick served in the Marines for eight years and deployed to several locations overseas. He described his service as one of the best decisions of his life because of the sense of direction it provided. “It ingrained in me an esprit de corps and a sense of duty to serve and protect people that has stuck with me ever since.”

Even after retiring from the military, Nick continues to help and protect others through his service. He previously worked for the City of Dallas for the Dallas Fire and Rescue Department. Now he works with Baylor Scott & White overseeing their emergency management department.

Their marriage is now going on 19 years. Today, they call Sunnyvale, a suburb of Dallas, home with their four children and two dogs.

A Path to Diagnosis

Like others with the disease, Nick found it difficult to narrow down when his symptoms appeared. He recalls noticing intense muscle cramping last spring in addition to muscle atrophy and extreme morning fatigue.

Nick’s search for answers continually pointed him back to ALS. “The top things that stood out in terms of the description of what ALS is was that I was within the age range and I was twice as likely to be diagnosed as a military veteran.” After a long process of seeing specialists and performing tests to determine the cause of these symptoms, he visited Texas Neurology. Their team of doctors put him on the ALS protocol.

Nick wasn’t surprised to receive a formal ALS diagnosis on September 8, 2020. “It’s sad, no doubt about it…but there was a sense of relief over me because there were several things within my attack plan that I couldn’t go after, I couldn’t start the fight in many ways,” he shared

Attack Life Sloan

What should have been a bleak moment, Nick used to bring hope and light. “I opened up a new note on my iPhone and instead of calling it ALS…I need an acronym…So it quickly morphed into Attack Life Sloan: my fight plan for what I was going to do every day and every week if I was diagnosed.”

Nick’s philosophy before ALS was to constantly move forward and seek opportunities for growth, while inspiring his children to do the same. ALS has not diminished that spirit. “Surrender is not in our creed. We’re not going to stop just because of some adversity in our lives. I still have life left to live on this earth.”

Friends and family of the Sloan family rallied around him after diagnosis, embracing the phrase Attack Life Sloan and using it as a rallying cry to support the family. Today, Nick sees Attack Life Sloan as a way to serve the ALS community.

“I feel called to do something and advocate, use this disease somehow with the time I have left on earth…Make an impact in the broader sense,” said Nick.

“We can pull that thread of, ‘Hey why are veterans twice as likely to be diagnosed?’ and still at the same time improve the general population’s experience with ALS.”

Embracing the ALS Texas Community

Nick first reached out to the ALS Association of Texas last summer once he came to suspect he would be diagnosed with the disease. “I think it’s been great, there’s so much to learn…It’s nice that the Association can simplify some of those things for us.” From equipment loans to support groups, Nick and Shanda know that ALS Texas is just a phone call away whenever they need them.

In true fashion, Nick has already embraced service in the ALS Texas community mere months after being diagnosed. He helps to lead a new veteran support group that ALS Texas launched this year. His family and friends even participated in the 2020 Walk to Defeat ALS, raising over $13,000 with their team: #AttackLifeSloan.

Keeping Hope Alive

It would be easy for the Sloan family to become discouraged by ALS, but they keep their hope alive. They dream that one day, we’ll live in a world without ALS. Nick wants significant energy brought forth from policy makers, legislators, and financial contributors regarding ALS. He hopes we can find better ways to detect the disease, better treatments, and ultimately a cure.

In the meantime, Nick continues to attack life every day, leaving a remarkable legacy of service and sacrifice for those that will follow him. “He has always been passionate about leaving a legacy…whether it’s through our kids or what he does in his work,” Shanda shared.

When asked how to inspire others with the disease, Nick without hesitation replied, “I would inspire them to attack life. I would inspire them to stay positive…absolutely keep on living, living life to the fullest.”

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Juan’s Story: Give the Gift of Time

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Family means everything to Juan and Meg. When Juan served in the military, their family felt it was a gift to be able spend time together as they traveled the world, from living abroad in Greece and England. After Juan retired, they kept their adventurous spirit alive, exploring Mount Rushmore and Seattle. Today, they call San Antonio home.

Veterans are twice as likely to be diagnosed with ALS than regular civilians, and Juan is one of those people. But the adaptive nature of the military lifestyle helped prepare his family for the demands of Juan’s ALS diagnosis. “We as a family are still dealing with ALS, but that doesn’t stop us from still living,” says Meg. They moved into a new home to enable Juan to move around safely, and up until the pandemic were still traveling as a family.

A longtime champion for the ALS community, Juan advocates for ALS patients’ rights in Washington D.C. and has worked closely with the ALS Association of Texas to raise funds and awareness. He has seen firsthand the impact the ALS Association of Texas has on the community.

“The Association has been an emotional lifeline. They make it possible for us to understand ALS, understand the challenges. Beyond the resources that the offer, such as wheelchairs, other medical equipment and supplies, they are a human connection that keeps you grounded,” says Juan.

Juan is a true connector and teacher who is generous with his time and story. Juan has even performed standup comedy (in his power wheelchair, of course), finding the humor in his ALS diagnosis.

“ALS for us is just taken in stride. Yeah, I have it, but it’s not going to stop us from greeting the next day and the next adventure.” This year, join Juan and Meg and support Texans with ALS by making a donation today.

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

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The New COVID-19 Vaccines and What They Mean for People with ALS

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Last Updated January 8, 2021

We know Texans with ALS and their caregivers may have questions about the new COVID-19 vaccines. Our team at the ALS Association of Texas is closely monitoring the development of these vaccines and how they are being distributed across the country. Our highest priority remains the safety and well-being of people with ALS, their families and caregivers. Keep reading to see the latest updates on the two new COVID-19 vaccines.

The FDA Has Approved Two New Vaccines

The FDA approved the Pfizer vaccine on December 11, 2020, issuing it for emergency use authorization. The Moderna vaccine was approved for emergency use on December 18, 2020.  Each state is responsible for their distribution plans, but due to limited supplies, both vaccines are being distributed first to front-line health care workers, and residents and staff of nursing homes and other long-term care facilities. The CDC suggested that the initial wave of vaccines be administered in the following order of priority:

  • Frontline health care workers and adults in long term facilities
  • Essential workers
  • Adults with high-risk medical conditions and adults older than 65

According to the Texas Department of State Human Services, “Texas continues to receive doses of the Pfizer and Moderna COVID-19 vaccines, and is distributing statewide to hospitals, pharmacies, local health departments, freestanding ERs and other clinics.” Read more about the vaccine distribution plan for Texas here.

View a map of vaccine providers in Texas. 

Do These New Guidelines Include People with ALS?

Specific diseases like ALS are not listed as a high-risk medical condition in the CDC’s guidelines regarding the first three-part phase distribution of the vaccine. The ALS Association is contacting U.S. governors to ensure that people with ALS are included in the third category based on the respiratory complications from the progression of the disease and the risk it carries.

Is the Vaccine Safe for People Living with ALS?

The ALS Association continues to consult with doctors specialized in ALS treatment and are encouraged by the safety and efficacy data. However, we still strongly advise that Texans with ALS consult with their physicians to discuss taking the vaccine as soon as supplies in Texas allow.

How Do I Prevent Exposure to COVID-19?

Despite the release of the new vaccine, cases are still growing in Texas. Keep yourself and your families safe by following the protocols recommended by the CDC. This includes, social distancing and wearing masks when you’re near people outside of your household, frequent handwashing, and avoiding crowds.

For the most recent information about the coronavirus (COVID-19), The ALS Association recommends that you reference the websites for the Centers for Disease Control (CDC), the World Health Organization (WHO), and state and local health authorities.

For specific information about symptoms you may be experiencing or questions about personal exposure as someone living with ALS or as a caregiver, please contact your physician directly.

If you have more questions about the vaccine and it’s distribution, reach out to our team using the Contact Us page!

FAQ's about COVID-19 and ALS

FAQ's about COVID-19 and ALS

How We're Continuing to Serve People During COVID-19