ALS Texas

ALS Association Makes Multi-Year Commitment to HEALEY ALS Platform Trial

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

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

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

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

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

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

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

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

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

Meet Megan Cooley – Our New North Texas Regional Director

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The ALS Association of Texas has been dedicated to serving and supporting Texans living with ALS since our formation in 2012. Since then, we’ve seen major growth in our patient community which has led to a greater need for our services. This growth inspired a new on-the-ground leadership model in each of our three regions: North Texas, the Greater Houston region, and the Southwest Region. Regional Directors in each region oversee a team of care services professionals, fundraisers, and operational staff, bringing them together to best support patient needs and community fundraising.

The ALS Association of Texas is happy to welcome Megan Cooley as our new Regional Director in the North Texas area! Megan is a seasoned professional with 17+ years of experience in a variety of non profits, most recently a local domestic violence program, and prior to that with the Arthritis Foundation. Megan and her family are natives to their home state of Wisconsin but are no strangers to Texas and look forward to relocating back to the Dallas area. Megan has a bachelor’s degree in communications, a masters in organizational change leadership, and most recently received her certification in executive coaching. Welcome to the North Texas team Megan!

Patients all over the state deserve access to resources and care, and we hope to position ourselves to be able to reach those in more rural areas and beyond. We’re striving to provide every Texan living with ALS access to ALS clinics, support groups, durable medical equipment loans and other resources. With this new regional leadership structure in place, we are equipped to grow in our reach and impact. Feel free to say “welcome!” to Megan at megan@alstexas.org and send over any ideas you’d like to discuss regarding The ALS Association’s work in the North Texas area.

Meet Paige Ridout- Our New Greater Houston Regional Director

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Since forming in 2012, the ALS Association of Texas has dedicated itself to serving and supporting Texans living with ALS. Over time we’ve seen our patient community increase which, in turn, has led to a greater need for our services. This growth inspired a new on-the-ground leadership model in each of our three regions: North Texas, the Greater Houston region, and the Southwest Region. Regional Directors in each region oversee a team of care services professionals, fundraisers, and operational staff, bringing them together to best support patient needs and community fundraising.

The ALS Association of Texas is happy to welcome Paige Ridout as our new Regional Director in the Greater Houston area. Paige is a seventh generation Texan, spending her childhood in Beaumont, Texas. After eighteen years with the FISD Education Foundation, Paige has officially joined the ALS Association of Texas team and we’re so excited to have her on board to further support our mission in Houston and it’s surrounding areas.

Patients all over the state deserve access to resources and care, and we hope to position ourselves to be able to reach those in more rural areas and beyond. We’re striving to provide every Texan living with ALS access to ALS clinics, support groups, durable medical equipment loans and other resources. With this new regional leadership structure in place, we are equipped to grow in our reach and impact. Feel free to send your own personal welcome to Paige at paige@alstexas.org with any ideas you’d like to discuss regarding The ALS Association’s work in the Greater Houston area.

Serving in the Military Poses 60% Higher Risk for ALS

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For decades, researchers have been searching for correlations that may give insight into what causes ALS. While the direct cause remains elusive, there have been interesting findings over the years that could possibly bring us closer to a cure.

The ALS Association has released a new report highlighting the prevalence of ALS among military service members. In the 2019 ALS in the Military report, it was found that those who have served in the military are at a nearly 60% greater risk of developing ALS than those who have no history of military service. In addition, the data shows that ALS is connected to military service regardless of the branch of service or whether serving during peacetime or in war.

The report compiled findings from research conducted from the early 1990’s up until recent years with one of these studies examining  military members going back as far as 1910.  Finally in 2008, after many studies and decades of research,  the Department of Veterans Affairs established ALS as a service-connected disease. Since then, the average number of veterans living with ALS has increased by a staggering 30 percent.

“Study after study has shown that our military heroes are more likely to develop ALS, which is why it is critical that Congress fully funds the ALS Research Program at the Department of Defense, as well as research at the National Institutes of Health,” said Calaneet Balas, president and CEO of The ALS Association.

We’ve made strides and progress but we need more support to fund research that could help both veterans and non-veterans alike. ALS is a devastating disease but with your help, we’re well on our way to a deeper understanding and possibility of a cure.

New Leadership Model Furthers Mission in Southwest Texas

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Since our formation in 2012, the ALS Association of Texas  has been dedicated to serving and supporting Texans living with ALS. Over time we’ve seen an increase in the number of patients we serve which, in turn, has led to a greater need for our services. This growth inspired a new on-the-ground leadership model in each of our three regions: North Texas, the Greater Houston region, and the Southwest Region. Regional Directors in each region oversee a team of care services professionals, fundraisers, and operational staff, bringing them together to best support patient needs and community fundraising.

Following the hires of our Houston and North Texas Regional Directors, in March of 2019 the ALS Association of Texas is thrilled to welcome Janette Surrett as our newest Regional Director, overseeing the Southwest Texas Region (from El Paso to Central Texas, Austin  to San Antonio, the Coastal Bend area, and the Rio Grande Valley). She’s the first to fill this new position and we’re excited to see how she drives the impact of our mission to best serve our community and support people with ALS and their families.

Janette has spent her entire career dedicated to non-profit causes and comes to the ALS Association of Texas with a wealth of knowledge and resources. Janette is thrilled to continue her work here with the ALS Association Texas Chapter as the Southwest Regional Director, and looks forward to joining a team of leaders dedicated to finding a cure for ALS as they serve, advocate, and empower those affected by the disease.

Patients all over the state deserve access to resources and care, and we hope to position ourselves to be able to reach those in more rural areas and beyond. We’re striving to provide every Texan living with ALS access to ALS clinics, support groups, durable medical equipment loans and other resources. With this new regional leadership structure in place, we are equipped to grow in our reach and impact. Feel free to send your own personal welcome to Janette at janette.surrett@alstexas.org with any ideas you’d like to discuss regarding The ALS Association’s work in the Southwest Region of Texas.

Voice Your Love, in Honor of People With ALS

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Actress Courtney Cox with former publicist and person with ALS Nanci Ryder

Over time an ALS diagnosis can mean the loss of your ability to work, your ability to walk, and, sadly, your ability to speak. This can leave many people with ALS unable to tell their loved ones, in their own voice, just how loved they are. Families living with ALS say this is one of the most difficult emotional experiences of this cruel and aggressive disease.

When was the last time you told someone how much you loved them? The ALS Association has launched a new movement that challenges you to do just that and post it on social media.

In honor of all those impacted by ALS, we invite you to #VoiceYourLove starting today. Film a short video expressing your love for someone or something you care about and post it to social media with the hashtags #VoiceYourLove #ALStexas. We’d love to share and amplify your message.

Will you use your voice to spread awareness for ALS? Join us in voicing love today!

Remembering Stephen Winthrop, Chair of The ALS Association Board of Trustees

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We’re sad to report that Stephen Winthrop, Chair of the ALS Association Board of Trustees, passed away peacefully on December 24th while surrounded by loved ones. Stephen will be remembered as a champion for those with ALS and a true ALS Hero.

On November 6th, 2013 Stephen Winthrop, Chair of The ALS Association Board of Trustees, was diagnosed with ALS. Without missing a beat, Stephen and his wife went to work spreading awareness of the disease through their Facebook page WillWinAgainstALS, and through fundraising- regularly being recognized as the highest earners for The ALS Association’s Massachusetts Chapter during the Walk to Defeat ALS.

Stephen taking part in the Ice Bucket Challenge

In his five years of living with ALS, Stephen was recognized with a Hero Award from the ALS Association, participated in clinical trials to further research efforts, took part in the Ice Bucket Challenge and served as Chair of the Board of Trustees. Stephen will always be remembered for his tireless work to spread awareness of this devastating disease.

“Over the past few years I had the privilege of working with Stephen on several occasions. Stephen led with wisdom, grace and showed true perseverance. He never let ALS define him. Stephen truly made a huge impact on the path to creating a world without ALS. He will be missed.”

Tanner Hockensmith
Executive Director
ALS Association of Texas

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 Texas Implements New Leadership Model to Manage Texas-Sized Growth

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New Regional Director Joins North Texas Team

north-texas-als
ALS Association North Texas team (left to right): Taylor Brewer, Care Services Coordinator; Christina Flinn, Special Events Coordinator; Janette Steinheimer, Care Services Manager; Catherine Nodurft, Regional Director; Sharon D’Souza, Operations Manager; Elise Bernard, Communications Manager

Since it’s official formation in early 2012, The ALS Association of Texas has seen an exponential increase in the number of Texans with ALS that it is assisting. Along with that growth came the increasing challenge of ensuring that the chapter was best positioned and resourced to provide people in every corner of the state access to ALS clinics, support groups, loaned medical equipment and other resources to live with ALS.

To that end, last year the chapter began developing a staffing structure that went beyond the traditional department-focused organizational chart to something that would provide for on-the-ground leadership in each of its three regions serving ALS patients and their families within Texas.

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Raise Your Voice: Together, We Will Be Heard

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May is ALS Awareness Month. For the next 31 days, we will be dedicated to education about ALS and the important work we’re doing to find treatments and a cure. This month is also dedicated to advocating for people with ALS and their caregivers.

This year, Raise Your Voice to bring awareness to ALS. Even if you’re a person with ALS who has lost the ability to speak, you still have a voice. You can increase ALS awareness by sharing your personal story on social media, writing letters to members of Congress, donating to our mission, and using speech generating devices and sign language to talk to people about the issues people with ALS face every day.

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