ALS Texas

ALS Hero: Steve Gleason

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Photo Credit: @teamgleason on Twitter

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

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

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

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

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

Project Revoice: Giving Back Voices Stolen by ALS

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What does it mean to lose your voice? For many, the loss of vocal communication means losing a piece of what makes them feel human. As ALS progresses it robs people of their ability to speak, leaving them to talk to loved ones through devices with clunky, computerized voices.

Pat Quinn, creator of the famous Ice Bucket Challenge, spoke to the ALS Association about the pain of losing your voice- “It is crushing when you have so much to say but you are almost forced to keep it in.”

We understand the pain patients endure as they feel their voices slipping away and we set out to do something about it. In 2018 we launched Project Revoice– an initiative aimed to return voices stolen by ALS. Thanks to technology created by Canadian-based tech company Lyrebird, ALS patients will be given new, natural sounding “voices” by having their own voices banked and fed through speech-generating devices.

It’s through Project Revoice that Pat was once again able to hear his own voice. “It truly feels like a piece of me that ALS took away has returned” he said, in his own voice. He continued, expressing how this new development gave him the push he needed to keep going-  “This has lit a fire inside me to continue fighting with everything I have.”

The ALS Association hopes to spark more innovative efforts like Project Revoice, and each and every day we’re making progress thanks to wonderful people like you! Would you like to help us create a world without ALS? Donate today.


How Sunny Erasmus is Raising Her Voice for ALS

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Since being diagnosed with ALS in 2015, right before her 28th birthday, Sunny Erasmus has become a warrior for others with the devastating disease. “There are many things that ALS has taken away from me”, she says, “but my voice is loud and persistent in the fight to end this disease”.

In May of 2018 she was one of 570 ALS advocates who made their way to Washington DC for the National ALS Advocacy Conference. There, people with ALS, their friends, and their families were able to make their voices heard and speak up for those who no longer can.

Twenty-two Texans traveled to Washington, D.C., in May to attend the National ALS Advocacy Conference.

At the conference advocates like Sunny learned about the latest ALS research, care service programs, and advocacy efforts to prepare them for meetings with Texas congressional staff and representatives. During those meetings advocates fought for public policy initiatives that would improve the lives of people with ALS, including:

  • Ensure at least $10 million in appropriations for the ALS Registry at the Centers for Disease Control (CDC).
  • Ensure at least $10 million in funding for the Department of Defense’s (DOD) ALS Research Program.
  • Support increased funding for the National Institutes of Health (NIH) in FY2019, especially in the National Institute of Neurological Disorders and Stroke (NINDS).
  • Pass the ALS Disability Insurance Access Act (S.379/H.R.1171) to waive the five-month waiting period for patients with ALS before receiving benefits under Social Security Disability Insurance.
  • Educate and influence Congress and Administrative officials to remove complex barriers to Medicare home health benefits for people living with ALS.

Sunny called the conference one of the most impactful experiences of her life, where she learned about what it means to be an advocate, what to advocate for, and the progress that’s being made by other ALS advocates along the way. “Keeping up energy and focus is hard”, she says, “but advocating for my fellow ALS soldiers has sparked a fire in me that will never go out”.

It’s advocates like Sunny that spark energy to create change in public policy and beyond. Interested in becoming an advocate? Sign up today!

 

ALS Association Awards $1 Million to Fund Potential ALS Treatment

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Today marks a monumental day for ALS research as the first in-human clinical trials of AT-1501 have begun. AT-1501 is an antibody therapeutic developed by the ALS Therapy Development Institute (ALS TDI), with support from The ALS Association, ALS ONE, and ALS Finding a Cure®. The drug blocks immune cell activation and protects nerves against the progression of ALS. As of today researchers at Anelixis Therapeutics, lead by Dr. Steve Perrin, have successfully administered a dose of AT-1501 to the study’s first participant.

This is a great progressive step on our journey for a cure, and we’re happy to announce that the ALS Association awarded an additional $1 million to Anelixis to help fund this groundbreaking research.

“We are proud to partner with Anelixis and other ALS organizations to help advance this promising compound into clinical trials,” said Calaneet Balas, President and CEO of The ALS Association.

The safety trial of this potentially new treatment is currently enrolling volunteers, both those with ALS and those without, to participate in the study. In total, eight people with ALS will receive AT-1501 and will be monitored for safety , tolerability, and how the drug moves through the body. If it’s proven safe the trial will then move on to Phase II.

We’re excited for the prospect of this new treatment and we remain hopeful that together with patients, caretakers, donors, and researchers we can create a world without ALS.

Help us create a world without ALS by donating today.

“Spark Hope For a World Without ALS” – Our 2018 Recap

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In 2018 we set out with the goal to spark hope, ignite action, and inspire others to join us in the fight to create a world without ALS. And it was thanks to our wonderful community that we were able to achieve that goal. Throughout the year we provided patient services, hosted community events, and helped fund life-changing research to find new treatments for this devastating disease.

Spark Energy

Unlock ALS

This year, we once again hosted our annual Walks to Defeat ALS. Thousands gathered to walk for friends, loved ones, and co-workers in order to celebrate progress and possibility of a cure for ALS.

This year we focused on strengthening our community of ALS warriors by launching UNLOCK ALS. UNLOCK ALS connected people through their unique ALS story, with every walker wearing a different colored key to represent how ALS has impacted their lives. From patients, to caregivers, to those who have lost a loved one, each person was able to find others with similar stories for much needed support and understanding.

Spark Innovation

Giving a Voice to Those Without

In 2018 we launched Project Revoice- an initiative aimed to help those who have lost the ability to speak. Thanks to brand new technology created by Canadian-based tech company Lyrebird, ALS patients were given new, natural sounding “voices” by having their own voices banked and fed through speech-generating devices. This eliminates the clunky computerized voices from the past, and allows patients to communicate while holding on to a familiar piece of themselves.

Learn more about this groundbreaking tech at www.projectrevoice.org.

Spark Breakthroughs

Making Strides with Research

Thanks to donations and funding from the community through the ALS Foundation, Houston-based neurologist Dr. Stanley Appel and his team discovered that Regulatory T cells may be a key component in the progression of ALS.

In addition, researchers have made other major strides including a pill to reduce neuroinflammation and developing antisense drugs. Our hope is that through these studies we can one day achieve our goal of creating a world without ALS. And it’s thanks to you that, step by step, we’re getting there.

Spark Hope

Looking to the Future

In 2018 we continued our focus on our local community. We increased our funding of clinics across the state, forged new partnerships to improve patient care, and helped clinics complete the requirements to become certified by the ALS Association, which unlocks additional funding and enables more clinical trials.

Next year we’d like to focus on continuing to expand and break down barriers of access to care. We hope to demolish the walls that limit those in more remote areas from getting the care they deserve and need.

With your help we can continue funding ground-breaking research, continue finding solutions to help ALS patients communicate and live comfortable lives, and we can reach those in unreachable places. Would you like to join our mission and be a spark to light the fight for an ALS cure? Donate today!

Introducing UNLOCK ALS

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The ALS Association Introduces New Mission Integration Concept at the Walk to Defeat ALS

Each year, hundreds of thousands of people across the country bring their determination, energy, and passion to the Walk to Defeat ALS to celebrate the progress made in the search for a cure with the ALS community. This year, we’ll honor our loved ones who are battling ALS and who have battled ALS through our new program UNLOCK ALS.

We’ll celebrate the real possibility of unlocking the mysteries of ALS. Anyone may hold the key to UNLOCK ALS – a fundraiser raising funds for the cure, a person with ALS participating in a clinical trial, a researcher developing treatments, even you.

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New Leadership Model Enhances Mission Focus in Greater Houston Area

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houston-team
ALS Association Greater Houston team (left to right): Jordan Coldrick, Care Services Coordinator; Paulette Bennett, Care Services Manager; Alexis Hyatt, Database and Operations Coordinator; Jessica Welch, Regional Director; Eniye Elegon, Regional Development Coordinator

In July 2016, the ALS Association of Texas welcomed Jessica Welch as the organization’s first Regional Director on its statewide team. Tasked with leading the full mission of the ALS Association in the Greater Houston and East Texas region, her leadership in this new role has catapulted the Chapter forward in achieving its mission.

Thanks to this new on-the-ground leadership in the region, the team in the Houston office has a greater sense of ownership of their work and a renewed passion for ensuring they successfully meet the needs of those living with ALS in the region. And the results are evident with improved communications and team cohesiveness among the care services, fundraising, and operations functions.

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ALS Caregiver Recognized for Excellence in Caregiving

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Caregivers of people with ALS are crucial in the care of their loved ones battling this disease. Being the primary caregiver for a loved one with ALS can be stressful – not only are you on call 24/7, but you may have additional outside responsibilities, like working a full- or part-time job or caring for additional family.

ALS caregiver Trixie Stanford was honored at the Gordon Hartman Family Foundation‘s 2nd Annual Excellence in Caregiving Awards in April. A Belton resident, Trixie serves as the primary caregiver for her son Charlie.

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Fishermen Cast a Line for ALS

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On June 8 and 9, more than 65 fishermen from around the state gathered for the first-ever ALS Fishing Classic in Port Mansfield, Texas, raising $30,000 for the fight against ALS.

Participants competed in a speckled trout and redfish competition for prizes furnished by Yeti. They enjoyed a raffle, live and silent auctions, and delicious local food.

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ALS Can Never Steal the Joys of Motherhood

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

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

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