ALS Texas

ALS Hero: Steve Brown

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Steve Brown has always been the life of the party. After being diagnosed with ALS, he has only grown to be more of an upbeat person. On March 23rd, during our fifth annual Shoot Out ALS Sporting Clay Shoot, we’ll be honoring Steve Brown as our ALS Hero.

To Steve, the number 24 signifies many things in his life. He spent 24 years serving our country, and just 24 days after retiring from the Navy he was diagnosed with ALS – on July 24th. Despite his diagnosis, Steve has chosen to look at the positives and live his life to the fullest.

Since moving to Houston in December of 2018 from Eunice, LA to be closer to family, he got involved with the ALS Association of Texas. Steve attends the clinic at Houston Methodist with Dr. Appel. Steve mentions, “it’s a great outlet as far as meeting other people with the disease, and it is great to get different perspectives from others in my same situation.”

His advice for others with ALS is to try to be positive whenever you can be. He says, “the more positive you are the better everyone else is around you.”

Steve has an amazing community of support. Between family, friends and the ALS Association of Texas, there is always someone that he can lean on. “Paulette with the ALS Association of Texas is awesome. She is always available. My wife and I went to the Astros game with the ALS Association of Texas and it was my first ever MLB game.”

One of his neighbors, who just happens to be from his hometown of Eunice, has become his “handy-man”. Whenever he needs anything, he feels confident in his circle of support.

This spring, Steve and his wife, Princess, are going on their second cruise since he was diagnosed. He’s not letting ALS slow him down. Steve’s hope for the future is for more people to know what ALS is and to help find a cure. “Hopefully more people continue to hear about ALS, what it is, and can put more money into ALS research – and one day there will be a cure.”

Support Texans living with ALS by joining us at the 5th Annual Shoot Out ALS in Houston on March 23rd as we honor Steve.

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 Association Makes Multi-Year Commitment to HEALEY ALS Platform Trial

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Photo provided by Texas Tech University Health Sciences Center in El Paso

This week a $3 million commitment was made by The ALS Association to the first platform trial for ALS. The platform trial will be taking place at the Sean M. Healey & AMG Center for ALS at Mass General in collaboration with the Barrow Neurological Institute and the Northeast ALS Consortium (NEALS). A “platform trial” is a clinical trial in which multiple treatments are tested and evaluated simultaneously. The Association’s commitment is $1 million per year for 3 years.

“This platform trial will significantly speed efficacy trials for ALS research, and is a major advancement for ALS research,” said Calaneet Balas, President, and CEO of The ALS Association. “In addition to supporting the HEALEY ALS Platform Trial, we will be working to ensure the rest of the research pipeline is moving fast enough to keep up. We are delighted to be partnering with Dr. Merit Cudkowicz and her team on this project.”

The platform trial model will greatly accelerate therapy development, allowing investigators to test more drugs, increase patient access to trials, and reduce the cost by quickly and efficiently evaluate the effectiveness of multiple therapies. This trial mode has already been proven successful in the cancer field. New treatments will be added to the trial as they become available which will decrease the gap in time from identification of an exciting therapy to testing. Having a shared infrastructure, common data & sample collecting processes, and centralized governance within the platform trial will help save time and money and led to more operational efficiencies.

“Working closely together, we will bring new therapies forward faster for people with ALS,” said Cudkowicz. “The platform trial builds on previous ALS Association supported research on many new ALS targets and trial innovations. The HEALEY ALS Platform Trial initiative can only succeed with the support and involvement of the entire ALS community. We look forward to ongoing partnerships with people and families with ALS, all ALS foundations, our colleagues in the NEALS Consortium, industry partners and regulatory agencies,” Cudkowicz added.

This funding from The ALS Association will directly support numerous parts of the platform trial. The following will directly benefit from this funding: the Clinical and Data Coordination Center activities at Mass General, the Biomarker Development Endpoint Engine, and the Monitoring and Outcome Measures Core at Barrow Neurological Institute.

The ALS Association will become an integral part of the Foundations and Benefactors Committee responsible for advising on study progress, data sharing, budget matters, fundraising, patient recruitment/retention and variety of other scientific and operational topics. In addition, the trial will be supported by the enrollment of patients at ALS Association Certified Centers of Excellence, Recognized Treatment Centers, and other affiliated centers.

This award to the Healey Center builds on a long relationship The ALS Association has had with Massachusetts General Hospital, Dr. Cudkowicz, and other researchers. The Association has committed over $9 million since 2010 to ALS researchers at Massachusetts General Hospital.

For more information, please email healeycenterforals@mgh.harvard.edu and visit the center’s website www.massgeneral.org/als/. To read the full press release, visit www.alsa.org/.

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.

Clinical Trials Give Hope to Texans with ALS

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The ALS Association of Texas invests in research to discover effective treatments and a cure for ALS. One of the ways we support research locally is through clinical trials, which are conducted at our ALS clinics across the state.

Dr. Carlayne Jackson, Medical Director of the ALS Clinic at UT Health San Antonio, first became interested in clinical trials in neuromuscular disease as a medical resident at the clinic. She would be the first to tell you she “fell in love with the patients” she treated during her residency, fellowship and eventually her first two years of leading the clinic’s ALS studies.

Founded in 1996, the clinic is designated as an ALS Association Certified Treatment Center. Dr. Jackson and her staff have used their multidisciplinary approach to offer hope for the future of ALS to their South Texas community and the 250 ALS patients they serve. Through the generosity of the ALS Association and the Glenn Biggs Institute for Alzheimer’s and Neurodegenerative Diseases at UT Health San Antonio, the clinic has recently been able to add neuropsychological testing and the services of a Nurse Research Coordinator to their offerings.

The Clinical Trials Process

The Research Coordinator meets with patients interested in participating in a clinical trial, sharing helpful information, including the number of visits, what to expect at each visit, potential side effects and treatment effectiveness. Once they have a thorough understanding of the risks and benefits, patients are screened to determine if they meet the criteria defined by the company or group sponsoring the trial. It is important to note that most of the criteria are put in place to protect each patient’s safety. Researchers must quickly determine if an intervention is working or not.

After a particular therapy has gone through Phase I testing on a healthy population, the San Antonio clinic conducts Phase II and Phase III trials on ALS patients accepted into the studies. Phase II trials focus on safety and dosing of the medication. Next comes the pivotal trial – Phase III – which the FDA reviews in order to determine the drug’s approval for patients outside of the trial. Phase II trials typically take six to 12 months, whereas Phase III trials can last 12-18 months.

The Importance of Clinical Trials

Dr. Jackson believes clinical trials are vital.

We will never be successful in bringing effective therapies to ALS patients without them first being studied in trials. We can’t prove what does or doesn’t work without a trial,” she says.

Through clinical trials at ALS clinics, such as the one at UT Health San Antonio, we are one step closer to finding treatments and a cure for ALS.

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.

It’s OK to Have a Meltdown!

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November is National Family Caregivers Month, and we at the ALS Association of Texas cannot think of a better time to share our enhanced support for family caregivers. You are appreciated, and each week in November, we will be connecting with you to share another tool for your ALS Caregiver Toolbox.

This week, allow yourself permission to have a meltdown!

Here’s another important resource to add to your ALS Caregiver Toolbox – the Caregiver Bill of Rights.

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Celebrating, Connecting, and Supporting Caregivers

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Tonya Hitschmann is the new Director of Community Programs at the ALS Association of Texas

November is National Family Caregivers Month, and we at the ALS Association of Texas cannot think of a better time to share our enhanced support for family caregivers, including youth and children involved in the ALS journey – with more communication and news that really matters; more tools and resources, and more connections. Connection matters. It matters to our patients, to YOU as a caregiver, and to the ALS Association Texas Chapter.

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ALS Association Awards Joint Grant to Help Fund Houston Neurologist’s Groundbreaking Research

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The ALS Association, ALS Finding a Cure (ALSFAC), and MDA have jointly awarded a $2.5 million clinical trial grant to Dr. Stanley Appel and his team of researchers at the Houston Methodist Neurological Institute, and Dr. Merit Cudkowicz and his team at Massachusetts General Hospital.

The funding award will allow Dr. Appel to expand the first-in-human study that demonstrated promising results leveraging patients’ own immune cells to treat ALS. [Read more…]

Baseball: Not Just a Game, But a Lifetime Passion

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Submitted by Darin Severson, Regional Operations Manager – South Texas, at Capital Senior Living

During a recent visit to Heritage Oaks, I was asked to meet with a resident who had a complaint and wanted to speak to someone in charge. I was introduced to the resident, Richard. Richard invited me in to his home, and asked me to sit down for a few minutes to talk. I quickly realized that Richard did not have a complaint, but a request. As I sat and listened to Richard, I understood that his request was a heartfelt request to enjoy his lifetime passion, one last time in-person.

It turns out that Richard has ALS and spends most of his days in his room, in his power wheelchair, listening to baseball games on the radio or watching the games on TV. His passion is the Houston Astros, and his request was very simple, yet powerful. He wanted to see his beloved Astros play one last time, in person, while he still had sufficient command of his body, and was able to enjoy the experience. His only issue was that no one in his family had a vehicle that would get him to and from the game, as he has a power wheelchair. A plan was developed, and with the help of the ALS Association of Texas, Richard would get his wish.

Two weeks after my meeting with Richard, he was surprised by his son and grandchildren with the news of his pending trip to the ball game. Richard broke down in tears when he heard the news. The day of the game finally arrived, the look on Richard’s face was like a child on Christmas morning. His son and grandchildren arrived at the community, and he was off on his trip to the Astros and Minute Maid Park.
While sitting at the game with Richard and talking with him, I learned that he was not just an Astro’s fan, but a historian of all things baseball, and all things Astros. I learned that the Houston Astros were originally the Colt 45’s, but, had to change their name because of a lawsuit. I also learned that Richard was an avid baseball player in his younger days and had always dreamed of making the “show”. In a rare moment of weakness from this man, he said, ”I had always dreamed of being in the majors, I just never thought that I would get a Major League Disease instead.” ALS or Amyotrophic Lateral Sclerosis is also known as Lou Gehrig’s Disease. Lou Gehrig was a baseball player for the New York Yankee’s for 17 years in the 1920’s and 30’s. ALS is a disease that impacts the neurons controlling voluntary muscles in the body. Richard later in the evening stated that he hopes that someday they will find a cure for this disease.

Richard continued his history lesson on the Houston Astros. He was at the first game in the Astrodome in the mid 1960’s, he remembers the events of the day well, and was able to recall the score. (I looked it up later.) He was spot on. The Astro’s defeated the New York Yankee’s 2-1.

The game was Thursday night, September 5th, the Astros found themselves down 7-1 after the second inning to the Seattle Mariners. Richard concentrated on the game, taking in the sights, enjoying his hot dog. Talking with his son and grandchildren and soaking up the experience. The Astro’s ended up winning the game in extra innings 11-9. Richard summed up the night with one word, “Amazing.” As Richard returned home, and was getting off the bus, he was beaming with happiness, and a grin that went from ear to ear. It was an honor to enjoy this experience with Richard and his family an evening I will always remember and be grateful for.