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/.

Clinical Trials Give Hope to Texans with ALS

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The ALS Association of Texas invests in research to discover effective treatments and a cure for ALS. One of the ways we support research locally is through clinical trials, which are conducted at our ALS clinics across the state.

Dr. Carlayne Jackson, Medical Director of the ALS Clinic at UT Health San Antonio, first became interested in clinical trials in neuromuscular disease as a medical resident at the clinic. She would be the first to tell you she “fell in love with the patients” she treated during her residency, fellowship and eventually her first two years of leading the clinic’s ALS studies.

Founded in 1996, the clinic is designated as an ALS Association Certified Treatment Center. Dr. Jackson and her staff have used their multidisciplinary approach to offer hope for the future of ALS to their South Texas community and the 250 ALS patients they serve. Through the generosity of the ALS Association and the Glenn Biggs Institute for Alzheimer’s and Neurodegenerative Diseases at UT Health San Antonio, the clinic has recently been able to add neuropsychological testing and the services of a Nurse Research Coordinator to their offerings.

The Clinical Trials Process

The Research Coordinator meets with patients interested in participating in a clinical trial, sharing helpful information, including the number of visits, what to expect at each visit, potential side effects and treatment effectiveness. Once they have a thorough understanding of the risks and benefits, patients are screened to determine if they meet the criteria defined by the company or group sponsoring the trial. It is important to note that most of the criteria are put in place to protect each patient’s safety. Researchers must quickly determine if an intervention is working or not.

After a particular therapy has gone through Phase I testing on a healthy population, the San Antonio clinic conducts Phase II and Phase III trials on ALS patients accepted into the studies. Phase II trials focus on safety and dosing of the medication. Next comes the pivotal trial – Phase III – which the FDA reviews in order to determine the drug’s approval for patients outside of the trial. Phase II trials typically take six to 12 months, whereas Phase III trials can last 12-18 months.

The Importance of Clinical Trials

Dr. Jackson believes clinical trials are vital.

We will never be successful in bringing effective therapies to ALS patients without them first being studied in trials. We can’t prove what does or doesn’t work without a trial,” she says.

Through clinical trials at ALS clinics, such as the one at UT Health San Antonio, we are one step closer to finding treatments and a cure for ALS.

Your Support Makes a Real Impact

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Our vision at ALS Texas is simple: to create a world without ALS. Everything we do – the services we provide, clinics we support, research we fund, and laws and policies we advocate for – is done to help search for effective treatments and find a cure for ALS.

None of this is possible without your support. Would you support our mission by giving a tax-deductible, year-end donation today?

Donate Now

ALS Texas Mission Impact from ALS Association of Texas on Vimeo.

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ALS Texas: 2017 By the Numbers

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At ALS Texas, we’re committed to providing quality services to people with ALS. From multidisciplinary clinics to support groups, financial assistance, loaning medical equipment free of charge, and research investment, we’re dedicated to helping patients live their lives to the fullest.

It’s only through the support of people like you that we’re able to do all this, and we want to thank you for helping make the past year a success. View the graphic below to see the impact of your donations in 2017.

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Support Plays Important Role in Living with ALS

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By Ben Stephens

Ben and his family

Like most people with ALS, I’d noticed some changes long before the diagnosis came. In August 2013, I began having difficulty buttoning my shirt. After seeing three different neurologists, receiving an incorrect diagnosis of multifocal motor neuropathy, and a series of tests like a spinal tap and MRI, I finally received a diagnosis of ALS in December 2014.

ALS has forced a lot of changes on my life. As an estate planning and probate attorney, I have a number of clients who rely on me. After my diagnosis, I hired an associate, which allows me to continue to work while living with the realities of ALS. I quit driving about two years ago, and I’ve learned to work remotely. I had to sell my house because of the stairs, and my family and I moved to a duplex. ALS has affected almost every area of my life.

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A Letter from the Board President: Multidisciplinary Clinic Access Expands in Texas

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When my father was diagnosed with ALS in November 2011, he and my mother began attending an ALS multidisciplinary clinic. He had been sick for three to four years and had seen doctor after doctor trying to get a diagnosis.  When he started attending clinic, the ease of a one-stop place for patients to see all the disciplines necessary to treat ALS gave my parents both relief and empowerment.

Aside from the relief of constant travel to numerous doctor’s appointments, multidisciplinary clinics help provide a better quality of life for a patient and caregiver.  From bonding with another patient or caregiver in the lobby over a shared experience to the ability to learn about new developments in treatments and research, the benefits are endless.

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Austin Family Grateful for Outstanding Support on Their ALS Journey

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By Jackie Barry

Jackie Barry lives with her husband Tom in Austin, Texas. She was diagnosed with ALS in 2016 and has been involved with the ALS Association since then. Read her story below.

In early 2015, I began having a speech problem, like a lisp, which seemed to get a little worse when I was stressed or tired. We were in the midst of getting home repairs done, so I thought it would just go away if I ignored it.

In August that year, I saw the doctor about it, and he suspected it could be a stroke or a brain tumor, among other things. I had an MRI, MRA and a carotid sonogram done, which all came back normal. Shortly after that, I was referred to a neurologist, who sent me for a swallow test, after which he believed it was a neuromuscular problem. He then referred me to Dr. Carlayne Jackson at UT Health in San Antonio. Dr. Jackson diagnosed me with ALS in February 2016.

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San Antonio Family Learns to Live with ALS

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By Guillermo Garcia

Guillermo and his family

My name is Guillermo Garcia. I am from San Antonio, Texas, and I was diagnosed with ALS in November 2015. It was ironic, because in August of 2014 we saw the Ice Bucket Challenge explode. Prior to that, we didn’t really have any knowledge of ALS and didn’t personally know anyone who had it. A group of us got involved in the challenge with my daughter’s softball team, and we started challenging everyone to do it. But we still didn’t really have a good idea of what it was.

In October of that year, my wife asked if I’d noticed that I had some twitching going on. I hadn’t until she pointed it out. We waited about a month to see if it would go away, but it didn’t. It just so happened that at the time, I was also having some issues with what we thought was carpal tunnel. I told my doctor about the twitching and was referred to a neurologist for some tests. I was diagnosed with ALS in November 2015, a year after initially noticing symptoms.

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Offering Help, Hope, and a Voice to those Living with ALS

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By John Quinn

John and his family

Like many people with ALS, I first noticed symptoms several months before I was diagnosed. In December 2015, I was dropping my right foot when I walked and began fatiguing more easily than normal.

I went to multiple doctors and finally saw a neurologist who suspected I had ALS, and he recommended I go to Houston Methodist hospital. In May 2016, I went through a series of tests for two days at Houston Methodist hospital and was given an ALS diagnosis.

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Rio Grande Valley Multidisciplinary Clinic Opens at Doctor’s Hospital

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Doctor’s Hospital and UT Medicine ALS multidisciplinary clinic teams partner for the Rio Grande Valley clinic opening.

We are pleased to announce the addition of a fifth ALS multidisciplinary clinic in Texas. The Rio Grande Valley clinic opened on Friday, October 27 at Doctor’s Hospital at Renaissance in Edinburg, Texas. Headed by neurologist Zuka A. Khabbazeh, MD, the team met with and treated five patients on opening day.

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