Rhema Jones, Author at ALS Texas

Young Caregiver Joins Miss Texas Pageant to Raise ALS Awareness in Honor of Her Mother

June 3, 2022 by Rhema Jones Leave a Comment

Lluvia Alzate recently wrote on her blog, “My mom would always say ‘vive la vida que se va y no vuelve’ which means live your life, time goes on and it will never come back.” Now that her mom, Fanny, is living with ALS, Lluvia embraces this motto every day.

Lluvia Alzate was born in Cali, Colombia. She’s the youngest of three children, with a sister 10 years older and a brother 6 years older than her. At just five years old, Lluvia, her siblings, and her mother, Fanny, moved to the United States. “Moving here, we pretty much started with nothing,” Lluvia shared.

Her mother worked incredibly hard to provide Lluvia and her siblings with the best life possible growing up. Today, Lluvia is still impacted by her mother’s incredible work ethic. “She always just instilled the importance of education in us and trying to push us to be the best that we could possibly be.”

Lluvia spent her youth involved in cheer, wrestling, and many other school clubs. Like many others, her first introduction to ALS was through the viral Ice Bucket Challenge. Her friends from her teams took part in the challenge thinking it was fun. “I never heard of ALS after that and I never thought I would even be affected by it,” Lluvia shared. Little did she know that this terrible disease would greatly impact her family’s life just a few years later.

In January 2018, Lluvia’s mother started to experience muscle fasciculations in the arm. The family didn’t think much of them. In fact, Lluvia also experienced spasms, joking with her mother that it was normal and nothing to worry about. Concerns arose when the fasciculations in the arms started to spread throughout her mother’s whole body. The family now began searching for answers.

They visited neurologists in November 2018, but all the tests came back saying that Fanny was perfectly healthy. Though the family was skeptical, they accepted the good news, and months passed with no changes.

The Day Everything Changed

Fanny stayed very active and frequently lifted weights. Suddenly, she couldn’t lift the same weights anymore and her arms felt weaker. The family returned to the neurologist for answers. All the while, in summer 2019 Fanny’s speech began to slur.

After more tests and appointments, Lluvia recalls the day that changed their lives forever. It was August 28. 2019, Lluvia’s first day of junior year of college, when she sat in the doctor’s office with her mother, sister and two other aunts. A doctor walked in and broke the devastating news. Lluvia’s mom was living with ALS.

Lluvia described the whirlwind of discovering the diagnosis. She didn’t know at first why everyone was freaking out over the news. “I had to go on Google and research what ALS was and that’s when my heart just completely sunk and I just had to take everything in all at once.” In the following days, a million and one questions ran through Lluvia’s mind. Could my mom continue to live in the house she was living? What will the progression of the disease look like?

Nothing would be the same for their family.

Adjusting to the Caregiver Role

After learning of her mother’s diagnosis, Lluvia faced many difficult decisions. She decided to cancel her lease to move back home with her mother to help around the house. Lluvia now juggled the role of full-time student and caregiver.

“You have to go back and analyze every single choice that you make, because now you have somebody that relies fully on you so you can’t keep making the same choices you were making before,” Lluvia Alzate

Eventually, Lluvia got her real estate license to help her family financially. Maintaining her college classes, job, and caregiving role became incredible overwhelming for her. She would soon take a semester off from college and later reduce her course load.

Lluvia’s life looks very different from what she would’ve thought it’d be right now, but she still cherishes every moment she has with her mother.

Navigating Life with ALS

As the family began to navigate this new diagnosis, the ALS Association supported Lluvia’s family. She feels grateful for the check-ins from the care services team and the knowledge shared about clinics, doctors, and equipment. All the while, Fanny was determined to stay positive through the overwhelming changes.

In her true spirit, she would not let ALS define her life, reassuring her family that everything would be okay. Fanny’s initial symptoms mostly affected her arms, but her legs remained strong. She and Lluvia would take walks around the block, enjoying the sunset and cool nights together.

A lot has changed for the family since Fanny’s diagnosis three years ago, but they still take their evening strolls together. “We still go on those walks, even though they do look a little bit different. Now she’s on a power wheelchair and trach, but she still looks forward to those walks every single day,”- Lluvia

While being an incredible support to her mother, Lluvia continued to pursue her education, taking a couple of college courses every semester. She smiled gleefully as she shared, she would graduate on May 14, 2022, with a degree in business finance. Since her interview, Lluvia has walked the stage and is excited to embark on a new chapter of her life

Becoming a Voice for ALS

Since her mother’s diagnosis, Lluvia has taken every opportunity to share her mother’s story and raise awareness to this disease. And recently, she discovered an unexpected opportunity to continue this mission.

While scrolling on Instagram one day, Lluvia saw that the Miss Texas Pageant was accepting applications for contestants. “Why don’t you do a pageant?” Lluvia’s sisters asked her. After some consideration, Lluvia applied and just a few days later, she was accepted and asked to register. She officially registered as a contestant and saw an amazing opportunity ahead of her through this event.

“Right then and there I also realized why not take advantage of that opportunity to make ALS my platform and shine a light on ALS because this is something that more people need to know about.” – Lluvia

Inspired by her mother’s fighting spirit, Lluvia hopes this opportunity will bring greater awareness to this awful disease. As a young caregiver, hopes her unique perspective will encourage people to get involved in the search for a cure.

Lluvia takes every opportunity to share her story, raise awareness, and raise money in support of other Texans with ALS. She manages her own website and blog lluviaalzate.com, where she shares her experience, educational ALS resources, as well as stories from the ALS community. She’s eagerly ready to serve on the committee for the Houston Walk to Defeat ALS in October.

In May 2022, she hosted a Bootcamp and Bubbles event that raised over $1,400 in support of Texans with ALS. “There’s not enough being done about ALS. We need to find a cure as soon as possible. If it’s not in my mom’s lifetime, it’s for the next person in the future,” Lluvia tearfully shared.

Ultimately, she hopes to let other young caregivers know they are not alone. They have great strength and voice in the fight against ALS.

“There will be many difficult times in this journey where you might feel overwhelmed, tired, sad, or anxious. Just remember that you’re not alone. Difficult times present like a unique opportunity to grow, so just embrace and cherish each day,”

Learn more about the viva la vida movement

Join the Walk to Defeat ALS

How the ALS Texas Community Impacts National Policy

May 24, 2022 by Rhema Jones Leave a Comment

On May 18, 2022, several guests joined ALS Texas for a special virtual ALS advocacy event. During this insightful presentation, they discussed their experience as ALS advocates, what victories they’ve observed over the years, and how you can join the fight as an advocate. Keep reading for a recap of this exciting event!

Fighting Locally to Impact National Policy

When discussing ALS Advocacy, it’s easy to assume it starts at the White House, but that’s far from the case. In fact, the most important work you can do is with your locally elected officials. Director of Advocacy at the ALS Association, Ashley Smith, joined us to discuss this grass roots approach.

Ashley grew up in San Antonio and felt eager to connect with our ALS Texas community. “I’m always excited to talk to all of our Texas Advocates about how we empower people living with ALS, their loved ones, and the entire ALS community to advocate on behalf of themselves,” she shared.

Through her position, Ashley empowers people across the country to advocate on public policies that will impact people with ALS and their caregivers. Advocacy takes place at EVERY level of the government. From mayors to council members, all the way to the House, Senate, Congress, and President, but it all starts locally.

The ALS Association accomplishes this mission in several ways:

Sending action alerts to registered ALS advocates to equip them to speak up and advocate for key issues.
Engaging in in-person efforts, like district events, meetings, and conferences through the year.
Partnering with other advocacy organizations

“We will partner with anyone who wants to work with us and who has a voice in this space,” Ashley noted. There are many ALS organizations across the country that participate in ALS advocacy efforts, like I AM ALS and the Muscular Dystrophy Association. Additionally, other rare disease organizations partner with the ALS Association as those policies can impact multiple rare disease communities.

For example, the 2015 Steve Gleason Act, spearheaded by Team Gleason, ensures all those who medically need communication devices will have them covered by Medicare. This massive win not only impacted the ALS community but disease communities whose illness affects the voice.

As a collective, we have more power and can reach many more members of Congress than we can as a singular effort. – Ashley Smith

A Veterans Perspective on Advocacy: Juan Reyes

Juan Reyes, Air Force Veteran with ALS, joined the panel to share his experience. Since his diagnosis in 2015, Juan has become an incredible advocate for the ALS community, especially other veterans. Juan and his wife, Meg, felt inspired by the countless other people with ALS and their caregivers. They watched as those advocates used their voice to make things happen. “That’s what I caught the bug,” Juan shared, “It really infuses us with light, energy, love, and just the momentum to keep moving forward.

Juan recalled previous years when the Advocacy Day was held in-person in Washington D.C., his first experience being in 2016. Hundreds of ALS families came to the capitol, using their walkers, rollators, canes, and wheelchairs. “Making our presence known, it’s a time to bear hope,” Juan shared. There he had the opportunity to engage with elected officials and their staff to advocate for the community.

He shares with them his story, how he and Meg adopted three beautiful children and how this disease affects them all. How his military service made him twice as likely to be diagnosed with ALS than civilians. He also makes a point to share new studies that show there are certain career fields within the Armed Services are up to 10 times more likely to develop ALS.

He also shares the challenges that the general population experiences with this disease, especially given our nation’s healthcare system. He’s proud to have seen things big ticket items pass like the ALS Disability Insurance Access Act, which eliminated the waiting period for SSDI benefits for people with ALS, and ACT for ALS Act which creates better access to promising treatments for people with ALS.

Juan looks forward to what advocacy advancements are down the road and the moments he’ll have with his family along the way. “Although ALS makes every day challenging, I personally live by the rule, life is beautiful and amazing even with a terminal condition.”

Finding Power through Your Story: Sunny Brous

Sunny Brous was diagnosed with ALS in 2015 right before her 28^th birthday. She’s been featured in many publications and partners with both local and national ALS organizations to advocate for change. Most importantly Sunny has found her voice and shares her experience on her blog SunnyStrong.com.

Since her diagnosis, Sunny has been to Capitol Hill three times, twice with the ALS Association and once with a rare disease legislation org. “Though those experiences were completely different, it’s still amazing to be able to be at the heart of where change happens and be able to own my voice through my story,” she shared.

Sunny encourages anyone that is even interested in advocacy to join the movement because of how simple it is. “They make it so easy. They send you the form letters, they tell you who you’re contacting, they draft the social media posts,” she shared. She noted they will even help you prepare points and your story if given a chance speak with an official.

Most recently, Sunny was thrilled to play a role in getting the ACT for ALS passed. “Getting to sit in my living room and watching President Biden come in and sign that into law just is amazing.” Sunny is testament to how people living with ALS benefit from these new laws. Through compassionate use, she receives a promising medication from the HEALEY ALS Platform Trial.

Being able now to participate in finding that next medication, finding that next therapy that makes this disease chronic and not terminal really rejuvenates my spirit and empowers me to keep going, Sunny Brous.

Sunny hopes that others will find the courage to join the fight against ALS as an advocate. Everyone has a story to share and deserves to have their voice heard. If you’re not ready to share your story, share Sunny’s story, share Juan’s story, share the stories from our community. “Anything you do is worthy of being shared and this community is better because of your voice,” Sunny shared.

How You Can Become an Advocate

From increasing funds for ALS research to the passing of the ACT for ALS Act, advocates across the country have helped make massive waves in public policy. But the fight isn’t over. We hope to make some significant advances in 2022, including:

Expand federal funding for ALS research
Ensure swift consideration and approval of new drugs at the FDA
Create more opportunities for people living with ALS to access new and emerging ALS treatments
Optimize Current Treatments and Care
Advocate for programs in Texas that improve the lives of people living with ALS and their loved ones

None of this is possible without you! Will you join the fight? Become an advocate in three easy steps below:

Sign up to become an advocate by visiting alstexas.org/action.
Keep an eye our for email notifications from our Advocacy team to take action! It’s as easy as clicking a button!
Share stories from the ALS community to ANYONE who will listen! Storytelling is a powerful tool to raise awareness to this disease.

You can also join us for the 2022 National ALS Virtual Advocacy Conference from June 14 – 16. During the conference, attendees will learn the latest updates in ALS research, care services, and advocacy.

Become an ALS Advocate

Join the Virtual 2022 National ALS Advocacy Conference

Together, we can create a world without ALS!

To hear more from Ashley, Juan, and Sunny about their advocacy experience, watch the full event recording below!

A Note from Tonya: May, May Be the Answer

May 6, 2022 by Rhema Jones Leave a Comment

May is National ALS Awareness Month, a month that is dedicated to education about the disease and the efforts happening around the world to find a cure, and to advocating for people with ALS and for their caregivers.

While designating one month as an “awareness” month is surely not an instantaneous fix, the increased visibility of the clinical statistics and shared personal stories just may be the missing pieces of the ALS puzzle.

Awareness can also be a tool for advocacy, an opportunity to connect with policy makers and share the urgency of action; backed up by our entire ALS Texas community! Every clinical trial, every milestone in advocacy leads us one step closer to creating a world without ALS.

Did you know that:

There are currently 58 active clinical research trials in Texas?
On December 23, 2021 we reached a groundbreaking milestone for the ALS community. President Joe Biden signed the Access to Critical Therapies (ACT) for ALS Act into law? ACT for ALS brings hope to the fight against ALS.
See more of our community’s impact in 2021:

There area number of ways to raise awareness, to help ensure that your voice is heard-and there is no age limit. Coming together as a community gives everyone an opportunity to become involved.

In Texas, we know that there are more than 3,000 young caregivers ages 5-30 years of age, and during the month of May, even youth and children can take action. We’ll tell you exactly how to do this and more in this newsletter!

How can you continue to raise awareness in the fight against ALS this month?

Urge your representatives to support ALS research funding by signing the Dear Colleague letter.
Tell Insurers and Policy Makers to Ban Discrimination Against People Living With ALS
The Institute for Clinical and Economic Review (ICER) is reviewing Amylyx Pharmaceutical’s AMX0035 and Mitsubishi Tanabe Pharma America’s (MTPA) oral edaravone. Their review will make a “value assessment” on these new therapies which will impact decisions on cost and access made by private and public insurance such as Medicaid at the state level and Veteran’s Affairs at the federal level. ICER’s value assessment uses methodology which has been called discriminatory by the National Council on Disability, a trusted advisor of the President and Congress. Sign the petition linked below to tell insurers and policy makers to ensure people living with ALS have immediate, full coverage and affordable access to new therapies. Sign our petition here.
Get an early start, and form your Walk to Defeat ALS team with family and friends.
- Celebrate with us in October! We will be walking in-person in cities across Texas –
  Dallas, San Antonio, and The Woodlands on October 1.
  Austin, Fort Worth, and Houston on October 15.
  El Paso and Rio Grande Valley on October 29.

Awareness creates a foundation for change.

Together, as an ALS Texas community, in May and every month, let’s lock arms and be the catalyst for change!

-Tonya Hitschmann, Director of Community Programs

Read the May Newsletter

View Our Upcoming Virtual Events

How the Equipment Loan Program Goes Beyond the Delivery

April 27, 2022 by Rhema Jones Leave a Comment

Texans living with ALS rely on medical equipment to help them walk, speak, move, and breathe on their own. Through the Equipment Loan Program, these families in need can access the equipment they need at no cost. This program is more than just the physical delivery of equipment to a family’s door. It is an incredible resource of knowledge, independence, safety, and hope to Texans with ALS.

Here are just a few ways our team together with community partners support the ALS Texas community beyond the delivery:

Collaborative Care through Equipment

Conversations regarding equipment typically start in the multidisciplinary ALS clinic. The different therapists—speech, occupational, physical, respiratory, etc.—can work together to give Texans with ALS a clear, collaborative picture of their equipment needs. Texans with ALS often go several months between one clinic visit to the next, but equipment needs constantly change.

In-home visits are critical in keeping up-to-date with these needs. Our team utilizes these visits to identify additional equipment needs and any changes needed to equipment being used. When ALS Texas is unable to make these visits, community partners like RQS fill in the gaps.

“When we’re in the homes, we are the eyes and ears, and we can intervene with all of this stuff,” Fernando Ortiz, Respiratory Therapist at RQS

Though RQS’s focus is respiratory needs, their team members are very attentive to the other needs of Texans with ALS. They relay this information to ALS Texas and the clinic, ensuring equipment needs are met in real time.

Navigating Equipment Needs through Insurance

For those with insurance or other health benefits, knowing when and how to leverage those benefits for equipment becomes confusing. Our team is here as a guide through those processes.

For example, Medicare will only cover one wheelchair purchase every five years. At first instinct, many families would use their insurance to cover the immediate need of the manual wheelchair. Our equipment team educates ALS families about this policy, directing them to utilize the no-cost Equipment Loan Program for their manual wheelchair. That way they can then use their benefits to cover the more expensive power wheelchair down the road.

Even after they are approved for equipment through insurance, Texans with ALS can wait months before receiving their deceives. The Equipment Loan Program fills the gaps with loaners from power wheelchairs to speech devices until their customized equipment arrives.

Staying Proactive

While every person’s ALS progression presents differently, staying proactive is critical to ensuring equipment needs are met in a timely manner for the maximum benefit. This is especially important when it comes to respiratory care. Keeping the respiratory system strong and healthy is crucial in preventing other illness.

“If we stay one step ahead of it, the outcome is better. We prevent them from catching pneumonia. We prevent them from admitting into the hospital, going into respiratory failure or respiratory distress,” Fernando with RQS shared.

Respiratory care for ALS is unique. With most other diagnoses, breathing devices are used to rebuild strength to a point where the machine is no longer necessary. On the contrary, people living with ALS benefit from using these devices long-term. The team at RQS begins this education at the very beginning when families are originally diagnosed.

This approach to equipment education is beneficial on all fronts—nutrition, breathing, walking, and speaking. “The more education that we can give the Texan with ALS and the family members up front, the more we will keep them out of getting into trouble down the road.” – Fernando RQS

Overcoming Fears and Building Confidence

ALS is an overwhelming disease. The transition from pre-equipment use to equipment use is challenging for both those living with the disease and their caregivers. “There’s an emotional barrier, a mental barrier there, to accepting equipment, and accepting the assistance from equipment,” shared Steve Morse, VP of Mission Delivery at ALS Texas.

Our team and our community partners like RQS are here to support these families as they navigate these fears and questions regarding their changing needs. When Texans with ALS and their caregivers gain the confidence to accept equipment and the knowledge of equipment, their lives change for the better. Caregivers feel equipped to give independent and safe care to their loved ones. Texans with ALS gain their mobility and a sense of normalcy back.

The Equipment Loan Program is truly life-changing for the Texans with ALS and their caregivers. Beyond the delivery of no-cost equipment to their door, our team and community partners like RQS are dedicated to supporting them at every stage of this disease. But we can’t do it without you.

When you support the Equipment Loan Program, you give Texans with ALS their voice back, their mobility back, and their quality of life back. Will you give? RQS has provided a $10,000 donation match for the Equipment Loan Program. Don’t miss the chance to DOUBLE your impact!

Donate to Support the Equipment Loan Program

Learn more about the equipment loan progam

Sweet Patina Challenge Brings New Life to the Fight Against ALS

April 7, 2022 by Rhema Jones 2 Comments

When Blake Evans felt inspired to combine his passion for cars with his heart for the ALS community, something unexpected happened. One rusty ‘57 Chevy and 48 states later, Blake and a small crew of family and friends created the Sweet Patina Challenge to embark what seemed like an impossible road trip to support the fight against ALS.

A Family Passion for Cars

Blake Evans, born and raised in Mississippi, grew up around cars from an early age. “I was born into it. My grandfather and my dad were old car guys,” he shared. “They restored old cars and always did the car show things.” The family passion for car restoration trickled down to Blake, and as he grew older, so did his own interest in cars.

“My main passion and hobby in life is tinkering with these old cars and taking them out on road trips, going out and finding the old junky ones that nobody thinks will ever run again and bringing them back to life.”

Today at 38-years-old, Blake lives in North Texas with his high school sweetheart wife of 14 years. They moved to Texas about 15 years ago when she came to be a cheerleader for the Dallas Cowboys. And now they have three beautiful children, one girl and two boys. They thought they’d be in Texas for just a couple of years. However, the Evans family fell in love with the Lone Star State and never left.

One thing didn’t change though—Blake’s love of cars. Years before coming to Texas, Blake also discovered another key passion that would later inspire him to join the fight to defeat ALS.

An Unexpected Interest in Healthcare

When it came time for Blake to graduate from high school, he knew he didn’t want to follow the traditional college route. “I actually wanted to be a firefighter when I graduated high school,” he shared. Unfortunately, Blake pinched a nerve while working for a fence company which put a pause on these plans.

“I went to a physical therapist and he started talking me through the education and all to become a Physical Therapists Assistant (PTA).” This chance encounter changed the trajectory of Blake’s life. Following much thought, Blake decided he wanted to pursue this career path—“I realized it was possible.”

Blake graduated from the PTA program in 2007 and immediately started working in sports rehab at an outpatient clinic. He also gained experience with nursing home and hospital work at this time. After moving to Texas with his wife, he found himself working in home health. That’s where Blake felt he shone as a PTA. “It just really clicked with my personality.”

Through this position, he met many people and supported them through numerous diseases such as Parkinson’s, MS, and ALS. “There’s such a wide variety of stuff you get with home health. It’s not just cookie cutter.”

A Budding Friendship

While Blake encountered many families along his career, he connected deeply with one of them. Several years ago, he met Mr. Bernard Rudler, who was living with ALS, and his wife. “There was something about Mr. Bernard that me and him kinda clicked. He had always been watching the old car restoration shows when I’d be there.”

Both Blake and Bernard enjoyed motorcycles and old cars. They connected more with each other more as Blake shared the adventures of fixing cars with his father. He would bring photos to share with Bernard of the cars during their appointments.

Through this friendship, Blake discovered the hardships those living with ALS and their caregivers face daily. “It’s heartbreaking,” he shared. “We’ve got these people battling this disease that there’s no cure for!” He decided that he wanted to do something about it.

Discovering the Patina World

While Blake worked as a Physical Therapists Assistant, he still found time to visit his dad to restore old cars. In fact, his father is known as one of the best automotive painters in Mississippi.

“Everybody is used to us having the really pretty shiny old cars,” Blake noted. He noticed a new trend growing in the car restoration space. Folks would restore the interior and hardware of an old rusty car but leave them rusty. This style of car generates a lot of attention. “You roll up in a rusty car and people wonder how you even got here,” Blake shared laughing. “It got us into the Patina World—which is the rusty car look.”

Blake and his father started doing road trips with their restored patina cars. These trips would soon inspire him to start his own challenge. He experienced some burnout with the traditional car shows, but he didn’t want to give up on his hobby. In 2018, an idea struck him.

“If we could take my career in healthcare, my passion for the old cars, and my love for helping other people and put them all together, this was kind of the recipe for it. The rest of it just started happening.”

Inspiration to Support the ALS Mission

Blake recalls the day he approached his dad about the idea. “We need to be doing something bigger, for a cause or something.” When his father asked what he had in mind, Blake responded, “I think I’m gonna try to drive this old car to 48 states.”

Blake’s father was shocked at the suggestion. “You think it can make it that far?” he asked. His father also brought up the considerations of having to balance family, home, work and an intense road trip. But Blake was persistent and knew he could do it. “The idea kept coming in my mind and I couldn’t shake it. I’m sure I bugged the heck out of my wife with it. She’s always supporting of my crazy ideas,” Blake shared.

He knew he wanted this road trip to act as a fundraiser for ALS, so he approached Mr. Bernard about the idea. Like many others, Bernard’s first question was, ‘You think that car’s gonna make it that far?’ And when Blake revealed he wanted the trip to benefit ALS, he remembered how Mr. Bernard selflessly responded. ‘Don’t do anything to raise money for me. Raise it for the Association [of Texas].’ Blake connected with ALS Texas to get everything set up.

The Sweet Patina Challenge

Pretty soon, they departed in a 57’ Chevy and the Sweet Patina Challenge was born. “You go drive a new car to 48-states, you’re like ‘that’s cool.’ But if you can take an old car and do it, everybody’s paying attention to that,” Blake shared.

Their main goal was to travel to the lower-48 states and participate in car shows along the way. The funds raised from these shows and the help of community sponsors supported their travels and most importantly create greater contributions to the ALS Association chapters.

Upon establishing his goals for the trip, Blake then turned to the community that he loved dearly. “I knew how generous the car community was,” Blake shared. He worked to build a team of partners and who could help with the cross-country road trip. “We were very mission driven.”.

The team split up Sweet Patina Challenge into four different legs. They partnered with shops across the country to store the car between the segments of the trip. This allowed Blake and the team to spend precious time with family and maintain their local obligations.

Blakes dedicated team of his father and friends were with him every mile of the trip. “We were extremely blessed. We had two different friends of ours who were mechanically inclined…They kept the car exactly how we needed it.”

Memorable People and Places Along the Way

Along the way, they not only stopped at car shows, but also notable tourist attractions. “We tried to hit most of the big landmarks because that’s where the crowds would be,” Blake shared. He listed off many places like Niagara Falls, Mount Rushmore, Pike’s Peak, Devil’s Tower, Yellowstone, Yosemite, and Sequoia National Park. He laughed as he remembered the day the team drove across Death Valley in California. They even fried an egg on the hood of the Chevy to demonstrate the intense temperatures.

“The highlights of the trip would definitely be getting to actually stop and meet the people that are battling it [ALS].” Through those families, he saw not only how the disease affects each patient differently, but also the hardship it places on the caregivers. “It’s really tough to see the caregivers struggling.” These encounters only lit more fire in Blake to help in the pursuit of a cure and better resources for ALS caregivers.

Inspiring Nationwide Local Support for the ALS Mission

Not only did they support the ALS Association Texas Chapter, but they also created fundraisers for all 42 chapters in the US. Whenever possible, Blake’s crew met with other local ALS Association chapters along the way. The more attention the car generated, the more they could share the ALS mission with the entire country.

“You go drive a new car to 48-states, you’re like ‘that’s cool.’ But If you can take an old car and do it, everybody’s paying attention to that.”

They would direct folks to donate to their local chapters when they asked about the road trip. “Now we have donations in 21 of the chapters across the country,” Blake enthusiastically shared. Just in the beginning of November, the team hit the $32,000 mark of total donations nationwide. Texas leads that effort with about $25,000 in donations! “It was an incredible trip. It’s kind of emotional thinking back on it,” Blake reminisced.

Honoring the Man Who Inspired the Challenge

Mr. Bernard Rudler passed from ALS earlier in 2020. While Blake couldn’t finish the trip before his passing, he knew Mr. Bernard wanted him to continue the fight against ALS. The fond memories of Mr. Bernard carried his team forward.

Blake, his father, and friends, Neal and Jacobe, kept on pushing and finished the final west-coast leg of the trip this summer. He remembered how the four men would celebrate with high-fives and hugs at each stop, feeling prouder as they came closer to finishing the goal.

“We took what passion we had for doing and we stuck to it…No excuses. We finished our 48-state drive.” – Blake Evans.

Turning Your Passion into Action

When asked how he’d encourage others to join the fight to defeat ALS, Blake emphasized the importance of passion. “If you can find something that you’re passionate about, you can make it successful. It’s gonna take persistence. Its gonna take time and sacrifice…. Know that it’s going to a good cause.”

For Blake his love of cars and passion for the ALS community turned into something amazing that will impact not only Texans with ALS but also those living ALS across the entire country. “I’m just proud that we did it,” he joyfully shared.

Blake like many others hopes to one day find a cure for ALS. He also hopes for better support for caregivers across the country and treatments to slow the progression. Every one of us has a role to play in the fight to for a world without ALS. “We all just gotta keep doing what we can to help find a cure,” he shared. Blake alluded to wanting to do another road trip down the road, but we’ll have to wait to see what the future holds.

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Donate to Support Texans with ALS

Blake extends his sincere thanks to the friends, family, community partners and sponsors who helped make his trip possible. View them here.

Mowing Down ALS One Yard at a Time

March 28, 2022 by Rhema Jones Leave a Comment

At fifteen-years-old, David Sedate is no stranger to ALS. When he was just 8, his Grandpa Rich was diagnosed with the disease and passed two years later. Today, David has committed to honoring his grandfather’s legacy by supporting the fight to end ALS.

One of David’s favorite memories of his Grandpa Rich was when they’d vacation to Montana together. It’s where Rich had grown up. Their 2012 trip would forever change their lives. It was then that the family first started noticing respiratory symptoms in their Grandpa. He’d soon after being diagnosed with ALS after visiting the ALS Clinic at UT Health San Antonio.

Following the diagnosis, the Sedate family relocated to a larger home to make room for their grandparents to move in. Rich’s ALS progressed quickly. Just soon after the family found out he had the disease, he couldn’t walk well anymore. He relied on a wheelchair to get around the house and spent a lot of time in bed. “It was always hard to see him like that,” David shared. But despite the adjustments he felt grateful that his grandpa was so close. “I got to spend a lot of time with him and see him a lot.”

Finding Support through ALS Texas

During that time, the family found support through the ALS Association of Texas. David’s mother recalls the challenges she faced making sure her father had the supplies he needed. “I found out and what I know a lot of ALS caregivers face is my dad was prescribed equipment that he needed, but the insurance doesn’t exactly really quickly approve all of those kinds of things, and so you get caught in the middle.”

She shared how ALS Texas was there to help fill the gaps when needed. At one point, Rich was in major need of a BIPAP machine. Unfortunately, insurance didn’t work fast enough to approve it. Through the equipment loan program at ALS Texas, the family was loaned a BIPAP machine free of cost. They even utilized a volunteer respiratory therapist who came to their house to show them how to use the machine.

I saw his lungs be able to fill up with air and it was the first deep breath he’d taken in a long time—and I just started crying. – Kristin Sedate

Through the Equipment Loan Program, they also received ramps to make the home accessible for Grandpa Rich’s wheelchair. The family also found community through local support groups.

Remembering Beautiful Moments

Just two years after being diagnosed with ALS, Grandpa Rich passed from the disease. Though he’s no longer with David physically, his memories of his grandfather carry him forward. David reminisced on the sweet memories he’d made with his Grandpa Rich during his childhood—from camping trips, to hikes, to exploring the State of Texas.

Even while living with ALS, David’s grandfather kept making memories. He taught David how to play the board game, Cribbage, and played it together every chance they got. One of his favorite memories with his grandfather after the diagnosis was the time he came to Grandparent’s Day at his school.

“So even it meant a lot to me, cause even though you know he was struggling with all the stuff he decided to come out and spend the day with me, it really meant a lot,” David shared.

Mowing Down ALS

David cherishes the memory of his Grandpa Rich as he navigates life. Today, he’s a Sophomore at Ronald Reagan High School and plays the trumpet in the school’s marching band. His band just recently won ninth place at the National Marching Band competition. When he’s not at school or band practice, David spends time with his new dog Pepper. He’s also found joy in a practical hobby—mowing lawns.

David’s older brother used to mow lawns for family and friends. When David turned 14, he started mowing lawns himself to make extra money. Instead of keeping the earnings to himself, David decided to contribute a portion of each lawn a good cause. He chose ALS Texas to receive those funds to support people like his Grandpa Rich living with the disease.

David’s mom, Kristin, is very proud of him and the work he’s doing in memory of her father through David’s Mow Down ALS. He encourages other youth to not be discouraged in getting involved in fundraising. Even the small amounts add up and bring us closer to a world without this terrible disease. Together, we can find a cure!

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Shoot Out ALS Hero: Diane Tobin

March 11, 2022 by Rhema Jones Leave a Comment

For every Texan living with ALS, a caregiver is standing by their side every step of the way. The selfless care of their loved ones with ALS is an inspiration to our community. That’s why for the first time in ALS Texas history, Diane Tobin, an ALS caregiver, will be honored as the ALS Hero for the 2022 Shoot Out ALS Houston Clay Shoot.

Diane smiled as she remembered the day she saw Jim for the first time. It was around 1968 and they were both juniors at the University of Houston. Diane noticed him playing cards in the student union. “He was really cute…and I remember sitting down at the table around where some of these tournaments were, hoping he would notice me.” After several weeks, Jim finally noticed Diane and asked her on a date, and the rest is history.

The two lovebirds were married for 47 great years, raising a beautiful daughter together and later adoring their grandson. Jim and Diane found much joy spending time in their Houston community. They held season football tickets for the University of Houston for nearly 30 years. The two were very active, playing tennis, going white water rafting, and even running half marathons together. In January 2016, their lives changed forever when Jim was unexpectedly diagnosed with ALS.

Cherished Memories

After the diagnosis, their ALS Clinic team encouraged the Tobins to travel and take advantage of the time left to make memories. “I didn’t really understand how fast things could change,” Diane Shared. They truly took that advice to heart starting with a dream vacation.

That summer Jim and Diane took a European cruise to Paris. “We went through Paris, all these beautiful little towns. And it was just a wonderful memory, just a beautiful memory that I really do cherish because it was a lifelong dream and we did it.”

By the time they left for the trip, Jim’s ALS progressed so that he couldn’t walk very far. Diane took pride in pushing Jim around in his wheelchair, embracing every moment together in the City of Love. “Something I would tell a caregiver is not to be so afraid to do things…You’d be surprised you can do a lot more than you think you can,” she shared.

Just a few months after their trip, Diane planned a massive 70^th birthday party for Jim. Nearly 100 friends and family showed up to celebrate him and the impact he had on their lives. And of course, the couple continued to show their devotion to the University of Houston, remaining ticket holders and frequently attending games with their alumni friends. When Jim moved to different stadium sections to accommodate his wheelchair, his fraternity brothers followed. “They were always just fantastic people in our lives and maintained that friendship,” Diane shared.

Finding the ALS Community

Initially, after Jim’s diagnosis, Diane shared they were scared to attend support groups for fear of what they would see. “We did not for like the first nine months go to any support meetings and this is the truth,” Diane shared.

When the two finally decided to go, Diane described the experience as amazing. Jim was eager to attend every meeting after, hurrying Diane to eat so they wouldn’t miss a single minute. And for as long as they could, the Tobins attended every connection group and Diane every caregiver support group.

Another way the two found hope was through the Texas Walk to Defeat ALS. Their team, Tobin’s Seals [Seeking to End ALS] became heavily involved as the years went on. Jim was even honored as the ALS Hero for The Woodlands Walk to Defeat ALS in 2019. In a touching speech, Diane shared:

Don’t stop living and challenging yourself. While many people let their illness define them and drop anchor, all of you and my husband Jim is evidenced by your being here at this ALS walk that you have chosen to redefine your life. You are living a life that has purpose and meaning.

Diane meant that with every fiber of her being, for Jim, for herself, for other Texans with ALS and their caregivers.

Evolving as a Caregiver

When a loved one is diagnosed with ALS, your life is turned upside down. For Diane, it threw her into a new world of being both a wife and caregiver to her husband. Though the journey was tough, Diane took every challenge in stride.

She once shared that during their trip to Paris, the front wheels of Jim’s wheelchair caught on the cobblestones. This caused him to fall onto the street, luckily with no injuries. Diane reflected on the incident, “We were just getting started…a bump in the road would not stop us.” She carried this spirit with her throughout their entire ALS experience.

As Jim’s ALS progressed, so did her caregiving experience evolve. As he would lose function of muscle groups like his hands, Diane added more duties that she didn’t have before. She spent several years thinking she had to do everything alone, but soon she realized it wasn’t possible. Diane noted how difficult it can be for caregivers to step back from their loved ones with ALS. Many think nobody does it as well as I do or nobody can take care of him as well as I do. But it’s a slippery slope to isolation and feeling trapped as a caregiver.

“At some point, you have to get help, and I did,” Diane shared. She was amazed to find the outside caregivers brought new things into Jim’s life that she couldn’t. They brought more laughter and adventure. And most importantly, they gave Diane the chance to invest time in herself so she could spend more cherished moments with Jim as his disease progressed.

Holding on to Love

Throughout Jim’s battle with ALS, Diane held on to love. Though her life was now filled with caregiver responsibilities, she never lost sight of their true relationship—husband and wife. “You have to be careful that you don’t lose your identity of being their wife or mother or whatever it is and start to become only a caretaker. They’re that same person. He was the same person I fell in love with,” Diane tearfully shared.

Remembering those things, Diane always strived to make sure Jim felt empowered to make his own decisions, even if she wasn’t ready for them. Diane described this time as the hardest thing she’s ever had to experience. As it became more difficult for Jim to breathe on his own, he was admitted into the hospital for seven weeks. The last three of those weeks, Jim was placed on a trach.

She noted that Jim never wanted to live with a trach and made the decision to forgo that treatment. Though Diane wished to hold on as long as she could, loving Jim also mean learning to let go.

I had to respect his decision because it was his life. When I would try to say, ‘Oh no we can work this out. We can do it.’ He would always say to me my decision…he would mouth it to me once he couldn’t talk. That’s what I’m talking about—empowering the person with the disease. – Diane Tobin

Jim passed from ALS in fall 2021. He lived a wonderful life surrounded by Diane, his daughter, and his siblings by his side. Though Diane cherished all 47 years together with Jim, she only wished she had more time.

The Next Chapter

Losing a loved one to ALS is devastating, yet it’s especially difficult for family caregivers. Diane describes the emptiness she felt after Jim’s passing. “After being a caregiver for so long, it’s like all-consuming to lose that job and lose that person.”

Today, Diane still holds on to those precious memories she and Jim made together—from their wedding day to raising their daughter, to football games at their alma mater, to Paris, and even in finding community through ALS.

That community has helped Diane as she walks into this new chapter. She’s connected with a group of five other ALS widows who frequently spend time with one another. “The ALS Support group gave me support after I lost my husband from a group of women that could totally understand…what I’m going through, the sadness because they’ve been there,” she shared.

She encourages other caregivers to lean into the ALS Texas community and find that support because it’s impossible to do it on your own.

This is a great organization because it helps people in the worst places…you helped alleviate that [fear] in our hearts and made the journey one we could make. – Diane Tobin

You can support ALS Caregivers like Diane Tobin by joining us for the 2022 Shoot Out ALS Houston Sporting Clay Shoot on March 24, 2022. Your support allows ALS Texas to continue investing in the selfless ALS caregivers in our community through mental health workshops, niche support groups, educational presentations, and more!

Learn more about the caregiver program at ALS Texas

Live, Laugh, Love & Pray: Rosalinda Steely’s Story

December 30, 2021 by Rhema Jones Leave a Comment

Live, Laugh, Love & Pray: Rosalinda Steely's Story

Rosalinda Steely has a rambunctious spirit and an infectious smile. From being a flight attendant to an athlete, to riding hot air balloons, she’s always lived her life with gravity-defying purpose. Now living with ALS, Rosalinda continues to bring light and laughter to those around her.

Rosalinda was born and raised in Newgulf, Texas. She is the sixth of eight children in her family. Rosalinda attended Wharton County Junior College before transferring to Texas Woman’s University in Denton, Texas, which was an all-women university at that time.

After graduating from college, she was employed by Daniel Industries as their bilingual secretary for the Vice President. Rosalinda left to become a stewardess for American Airlines, based out of Dallas. The job enforced high standards for hair and makeup, and required for stewardesses to remain single. Despite the rigorous policies, she enjoyed every moment, falling in love with cities along the way like New York City!

Eventually, Rosalinda settled down and left American Airlines. She later dedicated a decade of her life to serving others as a substance abuse counselor and as a volunteer for 10 years with the Houston Crisis Hotline. All the while, she raised three wonderful children, 2 daughters and her son, Travis who has been indispensable in assisting his mother whenever possible.

Rosalinda's Rambunctious Spirit

Throughout Rosalinda’s life, she has always been very active in sports, her favorites being basketball, volleyball, and bicycling. She’d continue cycling for many years after school. In the year 2000, Rosalinda experienced a serious ankle break during a biking accident that required five surgeries, and through today, she still has 2 plates and 8 pins in her left ankle. That accident however, didn’t stop her from pursuing other activities.

At 62 years old, Rosalinda started playing tennis. She continued to play, and sometimes even on the men’s teams, until five years ago when she experienced a rotator cuff injury which required another surgery. Around that same time, she met Bob at a Christmas party. The two have since spent the last few years building a beautiful life together. In February 2020, Bob proposed to Rosalinda, and they continue to make fun memories whenever they can.

New Changes

Back in October 2019, Rosalinda noticed a slight tickle in her throat. Just a few days prior, she’d recently had her flu vaccine, so her doctor believed it to be just side effects from having received the vaccine and prescribed antibiotics to alleviate her sore throat. The medicines didn’t help. She went back to her doctor who prescribed a higher dose of antibiotics. Those didn’t help either, and Rosalinda continued to experience discomfort in her throat.

Just a few short weeks later in November during a Thanksgiving trip to San Diego, Rosalinda’s speech was noticeably slurring. Throughout 2020, her ability to visit with specialists was limited due to the COVID-19 quarantine, however she was still able to undergo testing with neurologists, ENT’s, and was even tested for any signs of stroke, all to no avail. Then, in April 2021, she received her diagnosis. Dr. Stanley Appel officially diagnosed Rosalinda with Bulbar onset ALS.

Her rambunctious spirit and smile continue to bring joy and laughter to everyone around her. Now that she is living with ALS, that hasn’t changed. Today she still enjoys hosting elaborate dinners at home, setting her table with placemats, cloth dinner napkins and wine. Although swallowing has become extremely difficult, she and her fiancé Bob frequently go out for dinner at restaurants, and it is to everyone’s surprise she prefers her beer to be served in a wine glass!

The Biggest Loss

Losing her voice to ALS has been the biggest struggle of Rosalinda’s life. She is now confined to only using other methods of communication without her spoken words, but conversations often move too fast, and she cannot write quickly enough to be able to participate. People outside of her family don’t often show patience or grace when interacting with Rosalinda, which frequently leaves her feeling invisible. Both Rosalinda and Sandy sat in tears as Sandy shared how this disease is affecting her mother:

I see Mom wanting to participate in conversations and she wants to be engaged. It’s so frustrating because when we go out in public and Mom holds up a sign like ‘I cannot speak’, then they’ll begin to talk about her as if she isn’t there and address only me.” -Sandy Steely

Because of these challenges, her family has seen her spirit fade as she withdraws from conversations. They are desperate to hold onto their mother. “I want her to be able to advocate for herself now, knowing that she can still do many things,” Sandy shared.

Pushing Forward Through ALS

Rosalinda still has full use of her arms and legs. She walks, drives, cooks, shops and even makes trips to the salon herself. Though she’s lost her physical voice, Rosalinda is not letting ALS stop her from enjoying her life. She’s found new purpose in completing acts of kindness for her family and friends.

In February 2021, during the Texas freeze, Bob’s home was completely water damaged by pipes which burst due to the freezing temperatures. As a result, Bob moved in to Rosalinda’s home, and they worked together to repair and remodel Bob’s home as they began to build their lives together. In true go-getter fashion, Rosalinda jumped into action! Armed with a paper towel in her mouth to absorb saliva, and a paint roller in her hand, she alone painted every wall inside Bob’s house!

Rosalinda is also taking advantage of opportunities to travel and try new things. Every year she has travelled to San Diego to visit with her oldest daughter, Sharon and her family. This year, Rosalinda wanted to check another item off of her bucket list. So, Sharon arranged for Rosalinda and Bob to spend a lovely California evening riding in a hot air balloon over the California coast. Her next goal is to travel to Spain in 2022.

We're All in This Together

Rosalinda has found comfort in meeting other people living with Bulbar ALS through social media and support groups. “It’s amazing knowing I’m not alone and certainly learn what others are experiencing,” Rosalinda shared on her whiteboard.

On October 30, many members of her extended family all came to Houston to join her on the Walk to Defeat ALS to show their support for Rosalinda and others who are fighting ALS in Texas. She had team members from all across the country wearing lavender T-shirts in support of ROZZIE’S ROCKETS. Rosalinda feels hope knowing these efforts are supporting research for better treatments for ALS and most importantly, a cure!

Though her life looks very different today than it did two years ago, Rosalinda’s infectious smile and rambunctious spirit continue to bless those around her. She encourages others to not lose sight of their community as they fight this terrible disease:

Live one day at a time.
Listen to your doctors.
Live, laugh, love and pray.
We’re all in this together.

ALS is a devastating disease. The emotional strain ALS causes is heartbreaking. The physical and financial impact is great, but there is HOPE!

ALS Texas strives to support Texans living with ALS through equipment loans, support groups and critical research for a cure. Will you support these crucial resources? Make a gift today.

Together we can support Texans with ALS and their families. Together, we can find a cure!

ACT for ALS Act Signed into Law, Bringing Hope to the ALS Community

December 23, 2021 by Rhema Jones Leave a Comment

BREAKING ALS NEWS

ACT for ALS Act Signed into Law, Bringing Hope to the ALS Community

Today, on December 23, 2021, we’ve reached a groundbreaking milestone for the ALS community. President Joe Biden has just signed the Access to Critical Therapies (ACT) for ALS Act into law. The Senate voted unanimously to pass the Act on December 16, with it previously passing in the House 432-2 on November 4. This new law is over a year and a half in the making, being first introduced in June 2020. Since then, countless ALS advocates across the country have contacted elected officials over 30,000 times in support of the Act!

To see such tremendous support from our elected officials is proof that there is strong momentum in the fight against ALS. This law is a game-changer not only for those living with the disease, but also the future of ALS research.

Here’s everything you need to know about the two most important sections of ACT for ALS:

Increased Funding for ALS Research

One of the largest hurdles to ALS research is funding. ACT for ALS will alleviate some of that burden by providing researchers the support they need to study the disease. Section 5 of Act for ALS establishes a new Rare Neurodegenerative Disease Grant Program at the FDA.

Through this program, the FDA will award grants and contracts to both public and private entities to cover research costs. The funding would benefit not only ALS research, but also research for other rare neurodegenerative diseases in children and adults.

Specifically for ALS research though, ACT for ALS has secured $100 million in funding each year for ALS research (for FY2022 – FY2026). This is with the caveat that funding must be appropriated by Congress on an annual basis. This funding brings us one step closer to better diagnostic practices, treatments, preventatives, and ultimately a cure for ALS.

Expanded Access to Therapies and Treatments

Even with growing number of clinical trials for ALS, many patients are unable to participate. This causes many to miss their chance at potentially life-saving treatments. Section 2 of ACT for ALS aims to change this through the Grants for Research on Therapies for ALS program. It expands access to experimental treatments for patients who would otherwise be ineligible for ALS clinical trials.

These expanded access drugs are not covered by insurance, making federal funding crucial. This program would provide the necessary funding to entities for these investigational drugs. It does, however, require applicants to demonstrate that their expanded access program will not interfere with ongoing clinical trials.

What Comes Next?

ACT for ALS puts in place a long-term commitment on government entities in the fight against ALS. The FDA is now required to publish an ALS and Other Rare Neurodegenerative Disease Action Plan within six months. This document must detail how the FDA plans to support the development treatment to improve or extend the lives of people with ALS and other rare neurodegenerative diseases.

ACT for ALS also requires the Government Accounting Office (GAO) to publish a report within four years to the House Energy and Commerce Committee and the Senate Health, Education, Labor, and Pensions Committee. This report will review the performance of the new expanded access program and FDA research program. Additionally, the law creates public-private partnerships for these diseases, bringing together the NIH, FDA, and other entities in the search for treatments and a cure.

This amazing victory would not have been possible without the support of the countless ALS advocates across the country. We are also inspired by the brave people living with ALS who used their voice to make this a reality.

The ALS Association in tandem with I AM ALS, and the Muscular Dystrophy Association are deeply committed to advocating for those living with ALS. With this and the immense bipartisan support of ACT for ALS, it demonstrates that we are stronger together as we journey towards a world without this terrible disease.

Together, we can find a cure!

Positivity in the Face of ALS: Andrew Szabo’s Story

December 16, 2021 by Rhema Jones Leave a Comment

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Positivity in the Face of ALS: Andrew Szabo's Story

As a published author, marketing professional, and dedicated triathlete, Andrew has spent his life pushing the limits. Still today, even in the face of ALS, nothing holds him back.

Andrew Szabo grew up in England, though his family is of Hungarian heritage. In his early adulthood, Andrew moved to Chicago with Hyatt Hotels in 1980 where he meet his wife, Melissa. In April 1986, the two married and moved to Washington, D.C. where their two children were born. The family later relocated to Las Colinas, just outside of Dallas. Andrew and Melissa have lived there ever since.

In the 41 years since Andrew has lived in the U.S., he’s built an incredible life with his family while balancing an impressive career in customer service and marketing. Andrew has worked for some of the largest direct marketing agencies as well as smaller agencies. Over the last decade, Andrew struck out on his own to speak at conferences and push the envelope as an entrepreneur. He is also the co-author of Positively Outrageous Service, which has sold over 300K copies worldwide.

Through Andrew’s career he’s tapped into his positive spirit, working with national brands, hospitals, and cities to elevate their customer experience. “I love my business,” Andrew shared.

Pushing the Limits As an Athlete

When Andrew is not inspiring others with his marketing and customer experience knowledge or spending time with family, he’s being active. He started running while at university in the UK and became even more involved with the hobby after moving to the United Sates. He soon started to run long distance races, including the 1985 Chicago Marathon, the 1986 San Francisco Marathon, and the 1987 Marine Corp. Marathon, in Washington D.C. He has since competed in 3 other marathons over the years.

Andrew didn’t stop there. He started competing in triathlons in his 30s. Andrew later added long-distance bike rides to his regimen, completing more than 15 100-mile bike races. One of those races included the Hotter ’N Hell Hundred in Wichita falls in August 2019. It’s the largest biking event in North America. In an impressive feat, Andrew turned around and the next month in September 2019, he completed another triathlon.

Searching for Answers

That same year, Andrew started to experience twitching in his muscles. As an athlete, he just attributed it to his body recovering after intense physical activity. “When you work out, that usually dies down within 45 minutes to an hour,” he noted. However, the twitching would continue for a full day after a workout. He’d ask himself, ‘Ok, I worked out 15 hours ago. Why are things still twitching?’

The twitching persisted for almost six months. And when it came time for Andrew’s yearly physical check, his doctor became concerned. They sent Andrew to see a neurologist in January 2020 where he underwent EMG testing. Those results were inconclusive.

Andrew continued to do more tests and appointments for months to find answers. All the while, he noticed more unusual changes in his body. “I realized that I didn’t have as much strength as I did before,” Andrew shared. He started to worry even more after his family vacation in August 2020. During this trip, he attempted an open water swim and paddleboarding, both of which he struggled to complete.

He would resume testing after this trip, desperately searching for answers. By this point, his doctor had two conclusions in mind—either neuropathy or ALS. Andrew’s doctor prescribed treatments to rule out neuropathy, but the treatments did not bring any improvements.

A Shocking Diagnosis

Eventually, someone suggested visiting the Mayo Clinic for a secondary diagnosis. Andrew sent them all his test results and scheduled an appointment for late May. That month, Andrew received devastating news. “On Wednesday, May the 26^th, they told me I had ALS,” he tearfully shared. The diagnosis was a shock to both Andrew and Melissa.

Before ALS, Andrew was extremely active. “I used to workout 8 – 10 times a week…I used to mix it up, a lot of biking, running, swimming. I did a lot of yoga and HIIT classes, you know, all kinds of different things.” Today, simple tasks are becoming difficult to complete as he loses muscle mass in his upper body and hands. It’s difficult for him to write or cut things with a knife and fork. While he previously could swim a mile, he can hardly make 50 yards without becoming exhausted.

You know, people used to joke about me and say Andrew, you’re gonna be very lonely in your old age. You know you’re so fit, you know everyone’s gonna die before you. And then all of a sudden it looks like my expiration date is sooner than most people,” Andrew shared.

Despite the grim prognosis, Andrew is grateful that his legs are strong and that he can still speak and maintain his career.

Investing in the ALS Community

Following Andrew’s diagnosis, he and Melissa searched for support and community. Melissa shared how one friend reached out and highly recommended they connect with their local chapter of the ALS Association. At their first visit to the ALS Clinic with Dr. Heitzman, they met Tonya Hitschmann, the Director of Community Programs from ALS Texas. This encounter introduced them to our local programs like caregiver support groups, equipment loans, and educational programming.

Everybody has been extremely helpful to get us to where we are today to understand the reality, the financial, the things that we’re going to need the caregiving that’s gonna have to go into it, Melissa Szabo.

In the few months since they’ve connected with ALS Texas, the Szabo’s already feel like a part of the community. “We feel very blessed to have been connected into the ALS [Texas] Chapter and just the inclusiveness all the way around,” Melissa shared. They became heavily involved with the 2021 Walk to defeat ALS, even becoming the top fundraising team in Dallas.

Through ALS Texas’ programming, they’ve found connections with folks who understand the struggles they are facing with ALS. “Being able to connect with people that either have ALS, or have been caregivers to ALS is huge,” Andrew exclaimed.

Positivity in the Face of ALS

Andrew and Melissa are moving forward with glowing positivity in the face of a heartless disease. Andrew’s therapist recently told him, ‘For the people that handle ALS the best, I look for, I look for the three F’s—Faith, Family, and Friends.’ He and Melissa have those three things in abundance.

Andrew came to tears as he shared the vast number of people of faith who are praying for him not only in Texas but across the world. “We have a rich tapestry of friends and family that mean the world to us,” Melissa shared. And their family plans to continue living life as normal as possible, continuing to travel the world together and make memories.

These three pillars have given Andrew strength as he carries on. His life is far from over, and he feels God will use this chapter of his life in a powerful way. He hopes his story will bring more awareness to ALS so that one day, we can find a cure.

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Together, we can serve more Texans with ALS than ever before. Together, we can find a cure!