ALS Texas

ALS Hero: Brad Dusek

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To Brad Dusek, ALS is just another opponent. But this time the battle isn’t on the football field. This enemy is waging war on his body.

A Football Legend
Brad was born in Longview, Texas, in 1950. Being a Texan, he’s no stranger to the game of football; he’s been around it his entire life. His dad was a coach, and Brad started playing flag football in elementary school. Tackle football in junior high paved the way to four years playing at Temple High School, and he was later inducted into the Texas High School Hall of Fame in 2018. Afterward, Brad went on to play at Texas A&M University where he was inducted into the Athletic Hall of Fame in 2014.

As he was wrapping up his college career, he was drafted by the New England Patriots in the third round of the NFL draft. During training camp, Brad was traded to the Washington Redskins and was a linebacker for them until he retired from professional football in 1982.

Brad and his family moved back to Texas, where he shared his love of sports with his four children. Little did they know how much the athletic mentality of their family would prepare them for the road that lay ahead.

A New Opponent
Brad’s first indication that something was wrong was in the spring of 2017. As an athlete, Brad was no stranger to pain. “When you play sports you get hurt. You learn what pain is. You deal with it,” he says.

But this was different. Weakness on the left side of his body progressed until his leg muscles were deteriorating and his knee was hyperextending. It affected his gait and his ability to get around. He endured multiple surgeries and saw specialists for a year and a half in pursuit of a diagnosis. Brad went from being able to walk, to walking with a cane, to using a walker, and then a wheelchair.

The family finally took him to Houston’s Mayo Clinic (in Rochester, Minnesota) in September 2018, where he was diagnosed with ALS. They’d done their research, so they weren’t entirely shocked. Marta, Brad’s wife, says, “In a way, the diagnosis was kind of a relief because we had an answer. You can’t fight the unknown. At least we had a name to put on it. We had identified our opponent.”

Fight Like an Athlete
Brad’s daughter, Kimmie, says, “As an athlete, you’re taught that defeat and failure are not an option. Dad’s life has been defined by sports. He has always been an athlete to us, to everyone who knows him.”

Brad and his family weren’t going to let facts about his diagnosis get them down, even though a quick internet search revealed that currently there is no cure and that the life expectancy is one to five years. “We had the attitude that we’re going to find a way. And if we don’t defeat it, we’re going to prolong it. We don’t accept losing, because we’re way too competitive,” says Kimmie.

Brad’s athletic career has been one of his biggest assets in his fight with ALS. He says, “Being an athlete, you learn you have to fight the disease as if it’s an opponent. Keep fighting. Never give up.”

Linebackers: Tackling ALS
Shortly after Brad’s diagnosis, Kimmie decided to bring their family and friends together and participate in The Walk to Defeat ALS in October 2018. They called their team Linebackers: Tackling ALS, in honor of their dad and his football position. They used the event to announce Brad’s diagnosis to his friends, work community and former teammates. His hometown newspaper, the Temple Daily Telegram, also ran a story on Brad. Kimmie’s goal was $500. Thanks in part to social media, they were flooded with donations, and in two and a half weeks had raised more than $11,000.

At the Walk to Defeat ALS, Brad’s family members took turns pushing his wheelchair. Kimmie says, “That was our first big encounter with the ALS Association of Texas and our first time seeing people in different stages of ALS.”

Even the youngest members of the family have found a way to show their love and support for Brad. In the summer of 2019, Kimmie received an email about the ALS Youth Challenge. After talking with her sister, Ashley, the two decided to each host a lemonade stand to raise additional funds for the ALS Association of Texas. “It was our way of getting the grandchildren involved to help Grandpa, to rally around him and to show him the love they have for him. It was also a way to get the community involved,” says Kimmie.

The ALS Association of Texas
Brad and Kimmie call the ALS Association of Texas their lifeline. When they have questions, it’s the one place they can turn to. Soon after Brad’s diagnosis, Kimmie knew her dad and Marta would be coming regularly to Houston, where she lives. “I realized he wouldn’t be able to even get in my house or go to the bathroom, so I reached out to the ALS Association of Texas. They met me with a portable ramp and a shower and toilet chair that we still have.”

Marta adds, “They came out to the house not long after Brad’s diagnosis, did an evaluation and made suggestions to make our home more accessible.”

Brad is grateful for the platform football has given him to raise awareness of ALS. People who have never heard of it, or really didn’t know much about it, now know about the disease because of him. Brad’s former high school, A&M and Redskin football teammates have been a great support. Many have contributed to the ALS Association of Texas, furthering research for a cure.

Family is Everything
Brad has not accepted the sense of defeat that is often overwhelming with this diagnosis. And in a large part, that is due to his family. “We didn’t want Dad to feel like he was alone. We wanted to give him something to live for,” says Kimmie. Since his diagnosis, they have made family vacations, spending time together over the holidays and other activities a priority. For a family that has always been close, the fight against ALS has drawn them even closer.

Technology has also been a great tool in helping the family stay connected. The grandchildren clamor to FaceTime with their grandpa. And Brad and Marta’s “Skylight” picture frame enables the siblings to upload and share photos that the couple sees almost instantly. Marta says, “We love it! Every once in a while we’ll look over and the picture frame has a banner on it that says ‘tap for new photos.’”

Hope for the Future
Brad has great hope for the future. “They’re going to find a cure. I guarantee it,” he says. “It’s going to be in the 3rd or 4th quarter, but they will find a cure for it. And I want to help.”

Support Texans living with ALS by joining us at the 16th Annual ALL in for ALS on January 25th.

ALS Heroes: Jim & Diane Tobin

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Jim Tobin was training for his third half marathon when he began noticing weakness in his hips and right leg – not a good sign for a runner. Two and a half years later, in January, 2016, after many tests, he received the diagnosis that would forever change his life: ALS. 

His wife, Diane, says, “Those three letters sent shock waves through us when we heard them. Suddenly life was different.”

They wasted no time, and decided to travel to Paris, a dream that had long been on their bucket list. Though they had to navigate the streets of Paris with Jim in a wheelchair, the memories they made are something they both cherish.

That trip pretty much sums up how Jim has lived his life as a person with ALS. He is a testament to the fact that just because you have a diagnosis of ALS, it doesn’t mean you stop living and challenging yourself. He has chosen to redefine himself, to live a life that has purpose and meaning. He hasn’t let the disease take his joy.

The Importance of Community

Focusing on community, rather than isolating himself, has been one of the most important ways he’s continued to live his life to the fullest.

“ALS is an isolating disease,” says Diane. “There’s no better way to break down the wall of isolation than to build connections and community,” she adds. 

Jim and Diane have been fortunate to have the support of many friends. Diane says, “Jim made lifelong friends playing tennis and golf and running half marathons. To this day, they are still here for him, dropping by to visit and hosting their men’s breakfast group at our home.”

Hope for the Future

Jim is quick to say, “ALS is not incurable, but it’s a complicated disease. Curing it takes a lot of money.”

It’s that hope for the future that spurs his and Diane’s passion for raising awareness and resources to support others with ALS and to help find a cure. 

While they know they’re fortunate to be able to afford the care and devices Jim needs, they realize others are not. Jim recently was able to get an Eye Gaze machine, making it easier for him to reconnect with friends and family through email, texts and calls. He and Diane want others living with ALS to have access to the same kind of assistive technology. 

The couple believes the ALS Association of Texas helps people with ALS “live their lives in the best way they can.” That’s why for the past three years they’ve participated in the Walk to Defeat ALS in Houston. They and their team raise money for the ALS Association to fund research and support for those living with ALS. One particular program that is dear to their hearts is the ALS Texas equipment loan bank, which allows people with ALS free access to durable medical equipment and assistive technology. Equipment can be very expensive. ALS Texas provides this equipment, easing the financial burden and helping to provide a better quality of life for people with ALS. 

Since Jim’s diagnosis Diane has been inspired by a piece called  What ALS Cannot Do. It’s become the couple’s mantra and has encouraged countless individuals living with ALS and their families. 

“While you have ALS, you are not ALS. It is merely a part of you.”  – Diane Tobin

What ALS Cannot Do

ALS cannot cripple love.

ALS cannot erode faith.

ALS cannot destroy peace.

ALS cannot silent courage. 

ALS cannot suppress memories.

ALS cannot weaken family.

ALS cannot erode the spirit.

ALS cannot conquer the soul.

ALS Hero: Pete Frates

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In college Pete Frates was an all-star athlete, becoming the captain of Boston College’s baseball team and hitting a monster home run in Fenway Park in his final year. A few years later, on March 13th 2012, Pete was diagnosed with ALS.

Almost immediately after hearing the diagnosis Pete took the news as a challenge, asking his doctor “how much money do you need to cure this thing?” After hearing “one billion dollars”, Pete’s immediate response was- “I will get you a billion dollars.”

After watching his friends do silly challenges on social media, he and others affected by ALS came up with a simple idea – dumping ice water on yourself and encouraging friends to do the same to raise money for ALS. Although ALS was a relatively unknown disease, Pete had quite the network of friends – including athletes with large social media followings. Soon the Ice Bucket Challenge spread like wildfire. In the weeks and months after, celebrities like Lebron James, Oprah Winfrey and Bill Gates joined in, all to raise awareness and funds for ALS.

The Ice Bucket Challenge raised a staggering $220 million for ALS nonprofits, putting him well on his way towards raising one billion dollars.

It’s been 7 years since Pete’s diagnosis, and in the years since he’s continued to champion for those with ALS. His family said it best: “He was a beacon of hope for all.”

Pete passed away on December 9, 2019 at the age of 34, but his legacy will live on as a hero for people living with ALS. Thank you Pete and the Frates family for everything you’ve done to progress ALS research and bring us closer to a cure.

“We Walk to Fund Research” – Alberto’s Story

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We know that participating in the Walk to Defeat ALS is no small feat and we’re in constant awe of how teams come together to help create a world without ALS. From walking to honor a loved one, to hope for a cure, each walker has their “why” that keeps them motivated and dedicated to the cause.

We asked Alberto Schirmer, a person with ALS and past Walk participant, why he walks and here’s what he had to say: [Read more…]

“We Walk For ALS Awareness” – Sunny’s Story

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We know that participating in the Walk to Defeat ALS is no small feat and we’re in constant awe of how teams come together to help create a world without ALS. From walking to honor a loved one, to hope for a cure, each walker has their “why” that keeps them motivated and dedicated to the cause.

We asked Sunny Erasmus, a person with ALS and past Walk participant, what she walks for and here’s what she had to say:

I walk to raise awareness for this disease. Raising awareness in order to influence those able to find a cure. A cure means hope for a future, children with my husband,  and a life without this disease. I walk to join forces with my ALS community and show the world we’re here to fight.

Our team captain, Cindy, puts in large amounts of time and effort in order to engage everyone possible in our fight. After [the Walk] I feel loved, supported, and accomplished in our efforts.

– Sunny Brous Erasmus, diagnosed with ALS in 2015

What’s your why? What motivates you to keep walking? Email jacque@alstexas.org to share your story and inspire others, and register for your closest Walk today.

Register for Your Nearest Walk

ALS Advocacy in Action: Collin’s Letter to His Senator

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Fort Worth local Colin Hadley is an ALS Hero and inspiring PALS who advocates for the rights of those living with ALS. Read his letter to his Senator, urging him to consider supporting life changing legislation that could improve the quality of life for many patients:

On October 24, 2014 I was given a death sentence…I was given a diagnosis of ALS for which there is no cure and there are no treatments to stop the disease. It isn’t a matter of IF I and other ALS patients will die, it is inevitably WHEN each of us will die.

That day I thought of things that I was looking forward to later in life that would never occur now, such as walking my daughter down the aisle on her wedding day, or playing with grandkids. I gave myself one day to be sad, mad, and bitter. The next day I said I was going to take advantage of the time I have left to make as many memories as possible with my family.

My family and I adopted a motto that we have lived by each and every day: ‘Don’t Count the Days…Make the Days Count’. We’ve done a great job making the days count with over 25 trips in 4.5 years.
There are 3 reasons why I could make those memories with my family and why I am still alive and able to speak to you today: [Read more…]

“We Walk For A Cure” – Jackie’s Story

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We know that participating in the Walk to Defeat ALS is no small feat and we’re in constant awe of how teams come together to help create a world without ALS. From walking to honor a loved one, to hope for a cure, each walker has their “why” that keeps them motivated and dedicated to the cause.

Loraine, Texas native Jackie Barry is a mother, grandmother, and wife. And in February of 2016, after struggling for months with a progressively worsening speech problem, Jackie also became a person diagnosed with ALS. “I have entirely lost my voice and my arms and legs are slowly getting weaker and I will eventually lose the use of them also.” she says. Although she notes that ALS is always fatal and currently has no cure she still has hope for a world without ALS.

When asked why she participates in the Walk to Defeat ALS Jackie says:

Research is underway and ongoing to find a cure, which is being supported and funded by the ALS Association.  The ice bucket challenge, together with the various Walks to Defeat ALS across the state have raised several million dollars toward research, development and aid to the victims of ALS and their families and care givers.

My family and friends have participated in the Austin Walk to Defeat ALS to help raise funds for research, patient care and the search for a cure for this dreadful disease.  It is a great chance to meet other victims of ALS, their family and friends and the 3 walks we have participated in have been on beautiful days in a lovely setting and a lot of fun for everyone.

Jackie also noted how the ALS Association of Texas has helped her in navigating through life with as a newly diagnosed person with ALS. “Less than a week after I was diagnosed Jennifer Beckett, Care Services Manager with the ALS Association, reached out to us to come and visit with us, look at our home and evaluate what we may have to do to modify it to be accessible for me as my condition progresses.” Along with Jennifer, she also sang the praises of Regional Development Manager Michelle Miller who she says “works tirelessly and enthusiastically to raise awareness of ALS and is instrumental in coordinating the various fundraisers each year, especially the Walks.”

I have never known a more dedicated, helpful, compassionate and hard working group than everyone associated with the ALS Association Texas Chapter.  I feel blessed to have met so many of them who are fighting endlessly to find a cure for this terrible, disabling and eventually fatal condition. Thank you for allowing me to speak out for myself and the numerous other people across the state who are suffering from ALS.  Come join us to help work towards a cure for ALS.

-Jackie Barry

What’s your why? What motivates you to keep walking? Email jacque@alstexas.org to share your story and inspire others, and register for your closest Walk today.

Register for Your Nearest Walk

“I have ALS, but it doesn’t have me.” – Collin’s Story

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After being diagnosed with ALS in October of 2014, Collin Hadley gave himself one day to be frustrated, only one, before declaring “I have ALS, but it doesn’t have me.” 

Since that day Collin and his family have set out to make as many memories as possible, including 25 family trips, fundraising for ALS, finishing the Cowtown half marathon (in a neon pink stroller), and more. Although Collin strives to be positive he recognizes that not every day is easy. He says, “Though not visible on a daily basis, every month for the rest of your life is a little more difficult than the one before.”

Even in the face of ALS, Collin has continued to grab life by the horns with the help of the ALS Association of Texas. “When I had my first falls with this disease, they got a hoyer lift in my home immediately.  When it was no longer safe for me to stand up in the shower, they had a shower chair sent to me that day. When I could no longer get in the swimming pool with my kids, they found me a pool lift.” He went on to describe how an ALS Association representative made a 4.5 hour drive to deliver a power wheelchair to his hotel room when he was on vacation. “The ALS Association staff and volunteers have dedicated their lives to ensure that those living with ALS today can continue to live life and make memories”.

Collin stresses the importance of having a community of heroes to help people with ALS navigate through life- “This terrible disease takes a village, and thankfully the one many of you have built for me and my family is rock solid.”

Interested in becoming an ALS hero for people like Collin? Donate today!

ALS Hero: Steve Gleason

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Photo Credit: @teamgleason on Twitter

“ALS Hero” is a series focusing on highlighting notable PALS who have made an impact on their communities and the world at large.

In 2006 Steve Gleason was responsible for one of the most notable moments in New Orleans Saints’ history- his blocked punt in the Louisiana superdome, which had opened for the first time since Hurricane Katrina. Less than five years later, in 2011, Steve was diagnosed with ALS.

Since then, Steve has become an unwavering advocate for fellow PALs. Thanks to his push for technological advances to help those with ALS, Microsoft developed power wheelchairs that could be controlled via eye-tracking software. This is an amazing feature for people who have become weakened or paralyzed by the disease. Besides pushing for better tech Steve is also heavily invested in progressive research, holding the world’s largest coordinated and collaborative ALS research project in 2014. In 2016 his documentary “Gleason”, detailing his life with ALS, premiered at that year’s Sundance Festival to critical acclaim.

Now, our ALS Advocacy team is working with others to help secure Steve Gleason the Congressional Gold Medal. After all Steve has done to spread awareness and help his fellow PALS around the world, we think it’s well deserved! Want to assist us in this effort? Contact your House leader to request they sign on as a co-sponsor. Learn more here: https://www.honorgleason.com/contact

Interested in helping us in our mission to create a world without ALS? Donate today!

ALS Can Never Steal the Joys of Motherhood

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In 2001, Patricia and Oran Hamilton welcomed their son Patrick into the world. As Patricia started this new chapter in her life, she knew that she wanted to cherish every moment of motherhood. Over the years, she watched as her son grew, encouraging his love of learning.

When Patrick was 11, Patricia started experiencing weakness in her hand, and went to a neurologist who gave her three different diagnoses. In March 2014, she was finally diagnosed with ALS.

[Read more…]