ALS Texas

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.

Donate Today

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.

Donate Today

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.

Donate Today

Because of You: 2020 in Review

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This year our ALS community has come together in new ways, connecting from afar and working together, even when we are physically apart. In the midst of a pandemic your support never ceased. And because of you, we are now serving more people with ALS and their families than ever before.

Because of you, family caregivers are receiving the support and resources they need. Medical equipment is being loaned to people in need and alleviating their financial burden. Youth are sharing their voices and finding strength through shared experiences. ALS clinics are continuing to deliver specialized care and conducting clinical trials. New treatments are on the horizon.

Because of you, our Texas Chapter Events continue to raise crucial funds while moving to socially distanced and virtual fundraisers. And our Walk to Defeat ALS at Home brought Texans together from across the state, allowing us to gather safely even from afar.

This is how your support has made an impact on the lives of Texans with ALS.

Local Care Overview

Our team provides resources and support to people with ALS and their families. Your generosity enables us to continue this critical work, counseling newly diagnosed patients and helping Texans with ALS navigate the disease.

1,004 People with ALS are currently Registered with Our Chapter
(compare to 929 at this time in 2019)

From February to November 2020:

278 New Patients
(compare to 169 at this time in 2019)

1,165 Total Patients Served
(compare to 1,207 in all of 2019)

Learn more about our Local Care Programs.

Equipment Loans

Our Equipment Loan Program provides crucial medical equipment to people with ALS, without charge. COVID-19 impacted this program significantly and due to safety concerns we were unable to access and deliver much of our equipment in our loan closet. We were purchasing new equipment to continue to meet the needs of people with ALS, but saw our funding dwindle rapidly. We asked for your help, and through your support, we were able to get the funding needed to continue this vital program. Now, we’re working with our partners to deliver needed equipment in a safe manner and ensure people with ALS have the equipment needed to navigate their everyday lives.

From February to November 2020:

331 Pieces of Equipment Loaned to People with ALS

If you are a person with ALS or caregiver who needs help with equipment, please contact us.

ALS Multidisciplinary Clinics

In the early days of the pandemic, many of our ALS Multidisciplinary Clinics had to cancel regular clinic days. As time has progressed, each clinic has modified their operations to best serve the safety of their community. Most have now resumed normal operations or offer a combination of in-person and virtual visits. We’ve been working closely with our clinic partners to help keep our ALS community safe and ensure our presence as a resource for Texans with ALS and their families.

We partner with 11 ALS clinics across the state of Texas. You can see the latest update about clinics here.

Staying Connected

Gathering in-person is not an option for our ALS community who are at greater risk to infection during this pandemic. To stay connected we moved all support groups to virtual platforms, which have continued to meet monthly. In addition, we transitioned in-person educational presentations and workshops to virtual platforms and provided statewide access. Seeing an emerging need, we also added a Veterans support group.

From March to November 2020:

120 Virtual Support Groups, Workshops, and Presentations

1,336 People Engaged in Virtual Events

You can view our upcoming virtual events here, and watch recordings of past events.

Community Education

Community support has continued for Texans with ALS and their families. We worked with partners across the state to develop an educational series of presentations and interactive workshops. This included a clinical series, focused on different aspects of the ALS clinic, connecting healthcare professionals with the patients they serve.

View the Clinical Series

New Family Programs

We’ve been listening closely to our ALS community to discover where additional resources are needed. Two big needs have emerged: greater support for caregivers and programs for youth and children. This year we have begun rolling out these virtual programs.

Learn More About our Caregiver Program

Learn More About Our Youth & Children Program

Walk to Defeat ALS at Home

The Walk to Defeat ALS 2020 looked very different this year. Although we were unable to all gather in-person, we still stayed connected. Our Live Opening Ceremony featured teams from across the state and conveyed the incredible energy of our ALS community. Big News: We met our goal of raising $1 million. Thank you to everyone who participated in the Texas Walk to Defeat ALS !

Watch the Texas Walk to Defeat ALS Live Opening Ceremony

Research Progress

Because of you, research is advancing and a potential treatment is on the horizon. In September, the New England Journal of Medicine published the results of a phase 2 trial (known as CENTAUR) of the compound AMX0035, produced by Amylyx, a Massachusetts-based pharmaceutical company. The results of the trial were very promising – people with ALS receiving this drug experienced a significantly slower decline in disease progression and lived an average of six months longer, compared to those on a placebo.

The ALS Association and I AM ALS have issued a petition calling on the drug company and the FDA to make the treatment widely available as soon as possible. To date, the petition has received more than 50,000 signatures.

Advocacy

On November 11, the Senate recommended $40M for the Department of Defense ALS Research Program (double the previous year’s amount) and $10M for the CDC National ALS Registry in their FY2021 appropriations bills. These victories help us better support the ALS community and bring us one step closer to defeating the disease.

Next, we wait for the House and Senate to agree on final funding levels. We’re cheering on our ALS community who are continuing to fight to make this a reality.

Looking to the Future

Because of you, we have a lot to look forward to in the new year. In January, we will launch new support groups for elementary and middle school children, as well as teen and young adult groups. We will also kick-off an educational series for people with ALS who have been newly diagnosed and their families, providing them with the resources needed for their journey. This will include information about current research, multidisciplinary care, employment and insurance, and navigating the disease.

Because of you, we have been able to increase access to support groups, presentations and workshops via virtual platforms. As we continue to navigate the pandemic and look beyond this crisis, virtual programming will continue to be a critical part of our work, enabling us to reach Texans with ALS and their families in all corners of the state. Even when we can safely resume in-person gatherings, we’ll continue to provide a place to virtually connect, learn, and share.

In the face of the pandemic, you made this crucial work possible. Thank you.

Support ALS Research at the 11th Annual Cure ALS (Virtual) Golf Tournament

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Paul and Kathy Tavano are no strangers to ALS. In August of 2009, Paul was diagnosed after having symptoms of weakness in his hands and muscle spasms. When he and his family heard the projected lifespan of 2-5 years after an ALS diagnosis, and how there was nothing they could do about it – they wanted to take action. CURE ALS was formed and they have since set out on a mission to change that outcome, if not for their family, for others somewhere down the road.

“When you are diagnosed, friends and family want to help but there isn’t much they can do. So we got together with a few of our close friends and we were all golfers and had been to different charity events and felt that we could put on an event and raise funds that we would earmark for research. I was very adamant that I didn’t want it to be for me, and that I wanted it to be towards research. This year will be our 11th tournament, but this year it will be virtual,” said Paul Tavano.

As the 11th Annual CURE ALS golf tournament was approaching, Paul and Kathy kept hearing that research labs and non-profits were struggling because of the lack of funding and how fundraisers were being canceled due to covid-19. They sat down and said, “ALS isn’t going to stop, so neither are we.” This year the CURE ALS golf tournament is now a virtual one. So now anyone around the country can participate, and the hope is that not only will there be more golfers, but more people becoming aware of ALS and the need for research.

“The hope is that the research that is going on will show and develop treatment and help extend the life of those who have the disease. It may or may not help me, but it will help someone down the line. I hope that somehow, someway we have been able to make a difference, and hopefully, we will be able to see that difference,” said Paul.

The Tee Up to CURE ALS virtual tournament is September 11-25th and registration is open! If you aren’t sure how to help someone you know with ALS, this is a great way to show your support and have a little fun!

“Our tournament has always been about raising funds for research, having fun, and allowing the collective group to hear what is new about ALS research. Virtually you can have fun and help support research for ALS,” said Paul.

Register Today!

For more information about CURE ALS, visit WeWillCureALS.com

Save Lives Through the ALS Texas Equipment Loan Program

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ALS is an expensive disease, and one of the biggest expenses people face is the cost of medical equipment. The ALS Association’s Equipment Loan Program alleviates this financial burden by providing equipment to people with ALS for free.

COVID-19 has prevented ALS Texas from accessing equipment in our loan closet, meaning we are purchasing brand new equipment for Texans fighting ALS. Donations will keep the Equipment Loan Program operating, providing life-saving equipment to people with ALS.

Collin Hadley, person with ALS, speaks about how the Equipment Loan Program has helped his life.

“My fight against ALS has been no different. As a family, we have been determined to maintain positive attitudes and make as many memories as possible while we can. Our motto of, “Don’t Count the Days, Make the Days Count” sounds like an aspirational goal, but is only as good as the execution upon it. I’m here to tell you that the ALS Association has made it possible for me and my family to make the days count over the last four years.  

They have anticipated my needs and stepped up over and over with their ALS loaner closet.  

When I had my first falls with this disease, they got a hoyer lift in my home immediately. When it was no longer safe for me to stand up in the shower, they had a shower chair sent to me that day. When I could no longer get in the swimming pool with my kids, they found me a pool lift.  

My family and I took a trip to Colorado this past summer. The ALS Association delivered a power wheelchair to the hotel for me. On the first day, it was determined that the battery was dead and wouldn’t charge, risking me having to stay in the hotel room for the week…a representative from The ALS Association in Denver left at 6 am to make the 4.5-hour drive to get me a new loaner the next day.  These are a few of the many examples that have allowed me and my family to witness the dedication of the ALS Association.to get me a new loaner the next day.  These are a few of the many examples that have allowed me and my family to witness the dedication of the ALS Association.”

When you’re dealing with a disease that robs you of everything, this program can be life-changing. Support people with ALS today by donating to the Equipment Loan Program and our generous partner, The Barbara Ildebrando Fund, will be matching all donations up to $5,000.

Donate Today

Today is #GivingTuesdayNow

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#GivingTuesdayNow is a day when we give to causes close to our hearts, supporting nonprofits affected by COVID-19. In some way, you’ve been touched by ALS. Today is your chance to fight against it!

We Need Your Help.

Donate Now

The services we provide to people with ALS and their families are crucial. Because of the devastation COVID-19 has wreaked on the economy, the ALS Association of Texas is projecting a minimum loss of 50% which is close to $1.5 million.

Our ability to provide vital services to people with ALS and their families is at risk. People with ALS have lost so much already. Help ensure our programs are not lost, too.

It is not an exaggeration to say that I would probably not be still alive if it weren’t for the ALS Association.” – Laura, diagnosed with ALS in 2017

Today only, your donation has double the impact! Our generous partner, Respiratory Quality Services (RQS), will match every dollar up to $30,000.

We cannot let ALS defeat us. We must continue our fight. Your donation matters.

As long as I am able, I will raise my voice in the fight for those that no longer can.” – Sunny Brous Erasmus, diagnosed with ALS in 2015

Donate Now

Thank you to our generous sponsor, Respiratory Quality Services (RQS), for matching gifts this #GivingTuesdayNow. We are grateful for your continued support!

Fishermen Raise $39,174 While Casting a Line for ALS

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On the weekend of June 28th and 29th, 95 fishermen from around the state gathered for the second annual ALS Fishing Classic in Port Mansfield, Texas- raising $39,174 for the fight against ALS!

The Classic is the brainchild of John Spiekerman and Harvey Hardwick- two lifelong friends who have both lost loved ones to ALS. The pair felt compelled to engage the Rio Grande Valley community in the mission of the ALS Association and together they made the first event a success!

For the Second Annual Classic we kicked things off with a Captain’s meeting over dinner and drinks on Friday night, and the first boat set sail before sunrise on Saturday. During Saturday’s dinner we presented our winners with awards like “Best Team Name” and “Largest Catch”. Congrats to our winners Clay Morgan, Jay Freedman, and Andy Gonzalez!

During the event we honored our Rio Grande Valley clinic. With your help we’ve been able to expand our clinics into more areas to reach those in need, including Rio Grande Valley. Our Rio Grande Valley clinic opened in October of 2017 at Doctor’s Hospital at Renaissance and has been serving local ALS patients ever since! Thank you to Dr. Khabbazeh and his team for everything they do.

A special thanks to the volunteer committee for their commitment to making the tournament a great success: Dan Baen, Harvey Hardwick, Shirley Holm, Edie Katsfey, John Spiekerman, Martin Spiekerman, Becky Spiekerman and Kitley Wasicek.

Stay tuned for information about the 2019 tournament at alsfishingclassic.com.

See more photos from the event here.

Lil’ Linebackers Raise Nearly $4300 to Tackle ALS

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Here at the ALS Association of Texas we encourage everyone to fundraise your way by bringing your community together in creative ways for a cause! And Kimmie Longstreet and her Lil’ Linebackers are doing just that for ALS Awareness Month to honor their grandfather Brad Dusek- an ex-NFL Super Bowl Champion and person with ALS.

Brad’s nine grandchildren, the Lil’ Linebackers, gathered together on Youth Action Day, setting up multiple lemonade and ice tea stands while taking a pie in the face for every online donation. Together they raised nearly $4,300 in one day. We caught up with Kimmie to learn more about her “why” and how she’s making an impact in the ALS community:

Can you give us a quick intro about yourself? 

My name is Kimmie Longstreet, I am a stay at home mom of two little boys and the youngest daughter to an ex-NFL Super Bowl Champion who was recently diagnosed with ALS.

Can you tell us more about your motivation for creating your campaign? What inspired you to begin fundraising? 

My  motivation for fundraising for ALS was simultaneous to my father’s diagnosis.  There is so much unknown about this debilitating disease and so many people are unaware of the effects this disease has on not only the patient but all their loved ones and care takers.  The fact that the money we raise stays local to our region and we know where it is going and what it is being used for is helpful when asking for money.  Knowing that my father will be the recipient of the benefits of the money raised is huge.  Whether it be equipment or recipient to a new drug trial, or support for our family as we battle this disease with him, we know that our efforts are being realized locally to our loved one as well as other local ALS patients in our communities.

Have you done any fundraising in the past? 

My Dad was diagnosed at the MAYO clinic on September 21, 2018.  They told us about his diagnosis on September 24.  I had no idea how to help, I was still in the process of googling what ALS was when I came across the ALS association website and they were hosting an ALS Awareness Walk in Houston on October 13.  I signed up a team, Linebackers Tackle ALS, in honor of my father’s NFL position-linebacker.  We got our first donation on October 3 and by October 16, we had raised $10,419! My original goal was $500!! The amount of support we received really fueled our fight to tackle this disease that only weeks before had rocked our family to it’s core.  We were able to meet so many people during the walk and become part of such a great community, all in the battle against ALS.  We are looking forward to starting our team for the 2019 walk coming up again this fall and have big goals to raise even more this year.

Do you have any tips for getting little ones involved in fundraising? 

It was easy for us to get our kids involved.  My father has 9 grand kids who adore him.  They think his electric wheel chair is a personal go kart and his cool new minivan with electric ramp is a real life space ship. The silver lining in this entire situation is that this diagnosis of ALS has made our already tight knit family even closer.  We go out of our way to get dad involved in our kids events and make sure he is a part of everything we do.  We take a lot more pictures and celebrate the small things in a big way.  We are also all children of an NFL Super Bowl Champion, who played in the league for 10 years, to say we are competitive is an understatement.

The greatest lesson learned in all of this will be for them to see strangers, donating money to help their Grandpa. I know seeing this selfless act will leave an impression on their little hearts. -Kimmie Longstreet

Thank you so much Kimmie for all you do to support our mission of creating a world without ALS! Donate to Kimmie’s campaign here. Interested in creating a fun fundraiser yourself? It only takes a few minutes to get started!

Fundraise Your Way: Get Competitive!

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Here at the ALS Association of Texas, we’re dedicated to serving and supporting Texans living with ALS through advocacy, funding research, resources, equipment loans, clinic and more.  We’re only able to do what we do because of YOU, and we appreciate all the ways our community comes together to rally around our mission- creating a world without ALS. One of the ways our community supports this mission is through creative fundraising!

One example of a creative fundraiser is planning a sports-themed event and pitting teams against one another! Here’s what you’ll need to get started:

Pick a sport.

Doesn’t matter what you choose! Pick a sport you and your friends and family love playing and go from there. It could be dodgeball, baseball, golf or even frisbee!

Pick a location.

Ask permission to use a town recreation field, school, church gym, or other large open space. Or use your own backyard!

Find supporters.

Create a fundraising page or Facebook fundraiser to collect donations for your event.

Promote your event.

Use social media to spread the word about your event. While promoting share why you’re passionate about helping to create to world without ALS. Be sure to tag us (@alstexas) and use our hashtag #ALStexas so we can see all the amazing things you’re doing.

Gather supplies.

As your event day nears, collect any equipment you will need. Don’t forget things like water or snacks for your participants.

Have fun!

On your event day, remember to have fun! And take lots of photos/videos for social media!

Sports-themed events are a great way to sneak in some physical activity while having fun for a cause! Ready to lace up your sneakers and get started? Create a fundraiser today!