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

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

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

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

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

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

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

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

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

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

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

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

Embrace the Equipment: Mike & Mary Busch’s Story

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As ALS progresses, it robs you of the ability to eat, speak, move, and breathe on your own. One of the most important resources provided by the ALS Association of Texas is our Equipment Loan Program. Access to no-cost equipment loans, give Texans with ALS their much-needed freedom and mobility back. For ALS families like Mike and Mary Busch, this program is life changing.

“We’ve been great beneficiaries of the loan closet, and unfortunately though they had challenges during COVID in terms of delivery they made arrangements to have things direct shipped.” Mike shared. His family has utilized equipment like ramps for the house, a special shower chair, and Hoyer lifts. “They’ve come incredibly handy.”

For Texans with ALS, durable medical equipment not only allows them to maintain their independence but also allows their caregivers to better care for them. “I couldn’t do it alone if I didn’t have that Hoyer,” Mary shared, noting how they use the lift at least four times a day. “It’s a shame when you see people never getting out of bed because they don’t have the equipment. It lets you get up and feel like a normal human.”

Mike’s core strength has diminished as his ASL progresses, making it difficult to sit in a traditional chair. “One of the biggest lifesavers in addition to the Hoyer was a special chair that makes showering easier.” Equipment like Hoyer lifts, ramps, and shower chairs, bring Mike a sense of normalcy during an otherwise difficult ALS journey.

“Anticipating things coming down the line and getting the equipment before you need it is important,” Mike shared. Through ALS Texas and our community partners, we help Texans with ALS stay one step ahead of the disease.

One of Mike and Mary’s other big pieces of advice for ALS families: “Embrace the equipment,” even when it is overwhelming. “I can’t say enough good things about ALS Texas and how they’ve supported us. Just in bringing the community together and the equipment closet…I hope everyone would grab every opportunity they have to grab all the resources available,” Mary shared.

Learn More about the Equipment Loan Program

 

Go! Go! Go! – Bruce Gilliam’s Story

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

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

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

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

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

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

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

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

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

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

Juan’s Story: Give the Gift of Time

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

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

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

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

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

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

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

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Patricia’s Story: Give Courage

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Patricia is the captain of her life and her ALS diagnosis, but she didn’t always feel that way. She, like many others with the disease, took time to accept her diagnosis, acknowledge how her life would change, and how her son and husband would be affected.

Walking through the door of her first ALS Multidisciplinary Clinic was a hard step to take—she even tried to leave. Her husband Oran shared that once she was able to accept her diagnosis, Patricia found her courage.

Today, Patricia and Oran are advocates for the ALS community. She and her husband attended the ALS Advocacy Conference in Washington, D.C. in 2018, where they met with members of Congress to advocate for patient rights and research funding.

Patricia and Oran have hope for the future. They’ve worked closely with the ALS Association of Texas, finding the resources and support needed, and knowing that they are never alone on this journey. “They’ve helped me a lot… they’re always there,” Patricia says.

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

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John’s Story: Give Joy

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

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

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

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

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

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

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

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Walk to Defeat ALS Hero: Maria G. Sanchez

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Written by Maria’s daughter, Melissa.

Maria was a hero to everyone for many reasons. For her closest family, friends, and mentees it was because they could feel that Maria possessed the ability to see the very best in them no matter what. They knew that her occasional tough love was actually just the frustration she felt from them not living up to their own limitless potential.

Quite literally, she was a hero because she was a registered nurse, a nurse manager at University Medical Center (UMC) in El Paso, and a clinical instructor for The University of Texas at El Paso School of Nursing. She was a go-getter, a leader, and well-respected at the hospital and in her community. Maria was dedicated to patient care, and accomplished many “firsts” for UMC. She was a mentor to many. So much so that her UMC family continues to raise awareness for ALS and joins the Walk every year in her memory.

“She was full of life. We would go out shopping, and she would out-last everybody,” her daughter Melissa says. She always had an inappropriate joke, a Maya Angelou quote, uplifting advice and a prayer ready for any situation and any person that needed it.

Maria worked to instill strong values in her children, Melissa and Francisco, and sparked their desire to give back. Her motto was: “To whom much is given, much is required.” Melissa and her brother saw this in action, as their mother continuously helped family and gave back to her community, never expecting anything in return.

When Maria was diagnosed with ALS in August 2015, she didn’t tell her children or her family until January. She wanted to protect them, as she always did. She took the initial heartache, head on, with only her husband David by her side. She referred to him as her rock and her angel because he stood by her side through every heartbreaking battle so that their children and family didn’t have to worry. And they didn’t because they knew she was in the best hands.

During her battle with ALS, her humor and unwavering faith gave her family peace. Her smiles in photos were bigger than ever. Her daughter believes she did this consciously in order to show her loved ones that not even ALS could destroy her fighting spirit and the love she had for them. Her whole life, she embodied the Maya Angelou quote, “We may encounter many defeats, but we must not be defeated.”

After Maria passed away, her family felt called to honor one of Maria’s final wishes, “Life goes on,” she said, “You have to go on.” There was no better way for them to go on than to honor her life by continuing her legacy of giving back by starting the Walk to Defeat ALS team Maria G. Sanchez’s Warriors and volunteering with the ALS Association of Texas. They have even started reaching out to corporations to help secure corporate sponsorships for Walk to Defeat ALS. Their hope is that their efforts contribute to helping people with ALS and their families in even the slightest way.

“I want to tell people with ALS that you are not forgotten. You are not alone. My Mom at times felt like she was a burden to us, but it is the honor of our lifetime to be there for you in your time of need, just as you have always been there for us. You’re our heroes and you will always be our source of strength.”

Want to get involved and support Texans with ALS like Maria?

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Walk to Defeat ALS Hero: John Lay

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John Lay is a 3rd generation Austinite and a 4th generation Texan with a long history of being active in his community. He served on the Austin ISD school board for eight years and furthered his love for the river by serving on the Colorado River Alliance board for twenty years. Recently, John was bestowed the honor of having their annual River Hero award named after him. Family is everything to John and his wife Jill. Their tight knit family of five children and eight grandchildren must agree, as they all live within three miles of one another. John is outgoing, has never been afraid of a microphone or podium, and his children often joke that they are jealous of their parents’ fun social life and incredible friendships. John often says, “Surround yourself with people that make you smile.”

In early 2018, John started to have weakness in his arm. He consulted multiple doctors and went through many tests in search of an explanation. After no diagnosis had been made, he started to suspect that something serious was going on but didn’t want to worry his children. After a muscle biopsy later that year, a motor neuron disease was indicated. In early 2019, he was referred to Dr. Stanley Appel at the Houston Methodist ALS Clinic, and was diagnosed with ALS. The prognosis for survival with ALS patients is two to five years.

John and his wife Jill sat down with their family and shared the diagnosis without shedding a tear.

“I’m 70 years old, I’ve lived a long great life. Don’t be sad for me. The good news is we know this now and we have time together,” he told his children.

As soon as he was diagnosed, John and his family got to work researching everything they could about the disease and found the ALS Association of Texas. John and Jill joined the monthly support group and his children started their Walk to Defeat ALS team.

At first, John was hesitant to tell his story. He saw people in the support group and at the ALS clinic who were younger, with small children, and in later stages of the disease. When diagnosed, John was in his seventies, at the beginning stages, had watched his children grow to adulthood and have children of their own. He felt fortunate compared to many other patients.

Then John had a thought: “How do we raise awareness for this, not just for me, but for everyone with ALS?” As his children worked on their Walk team, they learned more about ALS advocacy and the work of the ALS Association of Texas. They talked to their dad about the impact of telling his story. John realized that “If my story can help other people and raise awareness, let’s go big for the Walk. I’m ready.”

The Lay family started recruiting friends and family to join Team John Lay for the Walk to Defeat ALS. “Everyone who has ever met our dad just loves him… They would do anything for him,” says his children. More than 150 people walked, 340 donated, and they raised $55,000!

They continued their Walk celebration at an after-party at a friend’s restaurant where John gave a speech.

“This has been the best year of my life,” John said. “The support that my family, friends, and children’s friends have given me has been incredible. This is a journey and I’m on the journey, but as I always tell people, everybody’s got something. Each person has situations with their own family, you just deal with those things, you support one another and keep smiling. I wake up every morning and I’m happy to be here and I try to make the best of each day.“

John was accepted into Dr. Stanley Appel’s groundbreaking Treg trial in March, just when COVID-19 hit Texas and everything shut down. But John was determined. “If I can be part of the science to move the ball forward to slow the progression or find a cure, to be able to contribute that, then I don’t feel like I’m sitting down not doing anything,” he said. Right now, John doesn’t believe he will see a cure in his lifetime. But Dr. Appel’s trial has been shown to slow the progression of the disease, and that could make all the difference for a person living with ALS. John isn’t participating in the clinical trial for himself. He’s doing it to help others in the future. And he believes that if someone is going to find a cure, it’s likely to be Dr. Appel and his team.

The ALS Association funds Dr. Appel’s Treg study and supports the Houston Methodist ALS Clinic, which is why John and his family are passionate about raising funds through the Walk to Defeat ALS.

Since his diagnosis, John has lost the use of his arms. But he has still made it a priority to live life to its fullest. After his diagnosis in 2019, he took a kayak trip down the Colorado River, went to Wrigley Field, and visited the casinos in Lake Charles. Today, he’s spending as much time as possible with his family and friends, which has been challenging during the pandemic.

This year, the Walk to Defeat ALS is going to be much different due to the pandemic. Instead of bringing teams together for one large event, as we have done in years past, teams are encouraged to host their own Walk to Defeat ALS at Home, in the way that works best for them. On October 31, instead of bringing together a team of 150, the Lay family will gather and walk around their neighborhood, at a social distance, walking in unity with the ALS community across Texas.

Fundraising during a pandemic is a challenge, “This is a disease where you can’t sit on the sidelines for a year or two because of the impact of COVID. ALS can’t wait. It’s going to be harder to get federal funding during the pandemic, so it’s going to be things like the Ice Bucket Challenge, the Walk, and individual donations that moves the needle closer to slowing the progression of ALS,” his children say.

John is grateful for his circumstances, which can be a surprising thing to hear from someone who has been diagnosed with ALS. He has chosen to approach this in a positive way, cherishing each day he spends with his loved ones, sharing his story, participating in the clinical trial to move research forward and raising funds so that one day we can live in a world without ALS.

Want to get involved and support Texans with ALS like John?

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Walk to Defeat ALS Hero: Judy Baucom

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Dawn and Shelley have been participating in the Walk to Defeat ALS in Dallas for the past nine years in memory of their mom, Judy Baucom.

Shelley says, “Mom was the most selfless person I’ve known, who always put others first and loved big.  She was a great listener and gave the best advice – my kids still talk about things that she had told/taught them!  Up until the end, she wanted to make sure her family and those around her were taken care of – her concern for others took priority.”

True to her nature, Judy had been taking care of her sister, who was battling cancer, when the first signs of ALS started to appear. She was dropping things a lot, tripping occasionally, and her speech was a bit slurred. But Judy and her family all thought it was due to the stress and exhaustion due to caring for her sister. “It all makes sense now, but at the time she just chalked it up to ‘I’m tired, it’s old age,’” says Dawn.

Judy pushed past her own symptoms and continued to lovingly care for her sister until she passed away in June. Three days later, Judy had a fall and her left side went numb. Everyone thought it was a stroke, due to the stress of losing her sister. She went to rehab, and her family noticed that even with physical therapy, she still was not improving, but instead getting worse. In September, she went to the ER with leg weakness and tremors, and after seeing a neurologist for tests, was diagnosed with ALS.

As soon as her family found out about the diagnosis, Dawn and Shelley researched the disease and signed up Team Judy for the Walk to Defeat ALS in November 2012.

Judy helped design the team shirts for her Walk team. She loved hummingbirds, and included one on the front of the shirt. Her Occupational Therapist, upon learning that Judy was an artist, created a stamp of Japanese characters for “hope” and “strength” that she put on the back of the shirt. He even bought her a watercolor kit so she could continue to paint the hummingbirds she loved.

After her fall, Judy lost the ability to speak, and relied on a small whiteboard to communicate with her loved ones, often writing words of encouragement and inspiration for her daughters. Even in the midst of ALS, she was still caring for others.

Judy’s health declined quickly, and in October went to a hospice facility in Tyler.  She passed away on November 10 – the same day as the Walk to Defeat ALS, and merely six weeks after Judy had been diagnosed. The night before, Dawn and Shelley visited their mom, knowing she did not have much time left, said their goodbyes and told her they were going to the Walk to Defeat ALS. They got the news early the next morning that she had passed away. “She knew we were walking. We always said she wanted to be there with us,” says Shelley.

At the Walk to Defeat ALS, in addition to friends and family, Judy’s nurses, physical therapists, and other people she had briefly met during since her ALS diagnosis, joined Dawn and Shelley. Judy had known some of these people just a short amount of time, but she had made a significant impact on them and inspired them to join the Walk in her honor.

“Mom not only showed strength through this whole process, but beautiful FAITH.  She was continually thinking of others and shared her Faith and Love in the Lord.  What a wonderful Legacy she left behind, and we have been so blessed to have her as our mother and friend.”

Dawn and Shelley have continued their mom’s legacy in the nine years since she passed. Over the years, they have hosted fundraisers for their friends and family, auctioned off Judy’s paintings to raise funds, and hosted a BBQ on Walk day for the Dallas ALS community, all to fulfill the vision of creating a world without ALS.

“ALS is a horrible disease…That’s why we do what we’ve been doing since the morning she passed. Try to raise funds and make sure that those that are still fighting and continue to fight have a chance. And that’s how we honor our mom,” says Dawn.

Want to get involved and support Texans with ALS like Judy?

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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.