ALS Texas

ALS Association Continues to Put Pressure on the FDA Following the We Can’t Wait Action Meeting

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One month ago on May 25, 2021, representatives from the FDA joined a We Can’t Wait Action Meeting. During this meeting, eight ALS advocates from across the US shared their personal experience with the disease to highlight why those with ALS need expedited access to experimental therapies.

Following the We Can’t Wait Action Meeting, the ALS Association sent a letter to the FDA that requests the agency to reaffirm their commitment to the 2019 ALS Guidance and provide details regarding how they have implemented the guidance.

The FDA’s Response to the Letter

Dr. Patrizia Cavazzoni, Director of the Center for Drug Evaluation and Research sent a response letter to the ALS Association on June 15, 2021. The letter acknowledges the “burden of ALS for patients, their families and caregivers,” noting there is an “unmet need for treatments” for the disease.

We can also assure you that we are exercising the regulatory flexibility described in FDA’s 2019 guidance for industry titled Amyotrophic Lateral Sclerosis: Developing Drugs for Treatment (ALS Guidance) and we continue to commit to doing so,” Dr. Cavazzoni shared in the letter.

The FDA responded positively to the We Can’t Wait Action Meeting, but the ALS community still has grave concerns. The FDA has not clearly communicated what they are doing to expedite the approval of promising treatments for ALS patients. Yet they allow regulatory flexibility for other disease treatments.

The FDA recently used its regulatory flexibility to approve Aduhelm to treat Alzheimer’s. While this is great news for those living with Alzheimer’s and their loved ones, those living with ALS are left to wonder why the same urgency is not granted to them.

In the letter from the FDA, Dr. Cavazzoni shared that they are “committed to exercising [the guidance] when appropriate.” However, the agency does not appear to make any of those considerations for AMX0035. The drug met its primary and secondary endpoints in The Phase 2 Trial and is generally safe. Yet the FDA requires another clinical trial.

Health Canada is already working with Amylyx to bring the drug to market for Canadians with ALS in 2021. Yet Americans with ALS will have to wait years to access the drug. That is if the FDA even allows it to hit the market.

How We’re Moving Forward

The ALS Association is deeply committed to expediting the access to promising drug treatments to those living with ALS. We hope to achieve this by:

  1. Continuing to put public pressure on the FDA
  2. Work behind the scenes to expedite change
  3. Seek greater public accountability for the FDA

Read more about this response and how the ALS Association is implementing the above action items here. Our organization will continue to share important updates as they arise as we continue the fight to end ALS. We will not rest until we find a cure!

Read the Full Letter from the FDA

Read the We Cant Wait Action Meeting Summary

Become an ALS Advocate

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.”

We Can’t Wait: ALS Advocates Urge the FDA to Expedite Access to Experimental Therapies

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The average life expectancy for someone after an ALS diagnosis is only 2 – 5 years. However, the process of developing, testing, and approving new treatments takes far longer. For those living with ALS, time is limited—We Can’t Wait.

On May 25, 2021, representatives from the FDA joined a We Can’t Wait Action Meeting. During this meeting, eight ALS advocates from across the US shared their personal experience with the disease to highlight why those with ALS need expedited access to experimental therapies.

Compelling Testimonials from the ALS Community

John Robinson from Parish, FL, a member of the board of trustees of the ALS Association and retired military veteran of nearly 32 years, was diagnosed with ALS in 2019. ALS not only affects the person with the disease but also their family caregivers. Both he and his wife can no longer serve their communities in the same way because of ALS. “The loss to society of their skills and humanity leaves holes never filled the same way again.”

Sunny Brous, a Texan with ALS, joined the call to share her perspective. Sunny was diagnosed with ALS in 2015 at the young age of 27. For Sunny, access to experimental treatments go beyond extending her own life. “Expanded access is how I can contribute to finding a cure for ALS. It takes my love for others and makes it a quantifiable action combining research and science and my dedication to the greatest good of people living with ALS.”

Sandy Morris, from Truckee, CA played a recorded message. She tearfully shared how many of her friends with ALS died waiting for access to life saving drug treatments. “Think about how much better it would be if we were able to die trying rather than die waiting,” she shared, urging the FDA to consider how their delays harm those living with ALS. “It’s not within my power to save my life—it’s within yours.”

Troy Fields from Champa Bay, FL was diagnosed with ALS in 2018. He noted how the considerations of benefits versus risk should be put in the hands of those living with ALS. “Because unless it is your own life on the line, you simply do not get it.”

Cari Meystrik from Nashville Tennessee was diagnosed with ALS in 1998 when she was only 28 years old. She has watched hundreds of friends die from this awful disease. “Would I jump to try a drug that might help me live longer of a disease that I am dying from if it has already proven to be sage and well tolerated but isn’t approved yet? Absolutely. Give me that chance.”

Jay Quinlan from New Orleans joined with his wife and caregiver Stephanie. “You have shown through your recent handling approvals for COVID vaccines that flexibility and expediting processes are possible.” He asked the FDA to use the same urgency when it comes to approving drug treatments for those living with ALS.

Tommy May from Pine Bluff, AR was diagnosed with ALS in 2005. Due to slow progressions, he was both unable to participate in clinical tries and frustrated with the lack of access to treatments. He discussed how those living with ALS are desperate for HOPE on their path. “We are not interested in the long-term. We are desperate for the here now.”

Larry Falivena of Apex, NC, has ALS caused by a mutation of the SOD1 gene. The fight for treatment access is not just for himself—it is also for his children. “I’m asking the FDA to help make sure my boys don’t have to worry about ALS.” He shares that even if the opportunity exists for just a small number of patients to have extended time on this earth that they need that chance.

Where Do We Go from Here?

In 2021, the ALS Association is committed to accelerating the development, approval, and access to affective new treatments. We will do this by re-introducing and passing the Accelerating Access to Critical Therapies (ACT) for ALS Act and the Promising Pathway Act, so the FDA is fully equipped to speed ALS trials and drug approvals. We will discuss these matters further during the annual ALS Advocacy Conference in June.

It is our sincere hope that the testimonials of these individuals and those who sent written stories will compel the FDA to make actionable changes for the ALS community. Time is off the essence—We Can’t Wait.

Submit your testimony to the FDA

Register for the Virtual ALS Advocacy Conference

Read Our 2021 Advocacy Priorities

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

 

2021 Under Ballou Skies Hero: Sarah Durand

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

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

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

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

Getting Connected with the ALS Community

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

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

A New Normal

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

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

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

Fighting to Raise Awareness

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

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

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

Supporting Texans with ALS at Home

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

Secure Your Party with a Purpose Basket Today

Support Texans with ALS

 

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

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

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

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

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

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

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

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

View our 2021 Public Policy Priorities

Become and ALS Advocate

2021 Shoot Out ALS Hero: Stacy Brown

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

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

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

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

The Beginning of an ALS Journey

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

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

Joining the Fight Against ALS

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

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

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

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

Foundation of Faith

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

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

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

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

#JustLiving

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

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

Encouragement for Those on The ALS Journey

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

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

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

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

Register for Shoot Out ALS Houston

Donate to ALS Texas

ALL in for ALS 2021 Hero: Nick Sloan

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

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

Discovering a Passion for Service

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

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

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

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

A Path to Diagnosis

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

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

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

Attack Life Sloan

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

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

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

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

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

Embracing the ALS Texas Community

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

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

Keeping Hope Alive

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

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

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

Join a Support Group

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Juan’s Story: Give the Gift of Time

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

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

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

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

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

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

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

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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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