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New Research Update for Proposed ALS Drug Treatment—AMX0035

September 15, 2021 by Rhema Jones Leave a Comment

We’re excited to share another milestone in the search for better drug treatments for ALS. Amylyx announced today that the company will soon submit a New Drug Application (NDA) for AMX0035 to the FDA. The ALS Association has been closely following the development of this treatment, even providing serious funding to propel its development.

Supporting the Development of a New Treatment

Many of these donations were received during the record-breaking ALS Ice Bucket Challenge in 2014. The ALS Association provided a grant of $750,000 for a clinical trial pilot in June 2016. The next month, a $1.46 million grant was provided to the Northeast ALS Consortium (NEALS) to fund the phase 2 CENTAUR clinical trial of AMX0035.

In September 2020, the concluded trial reports were released. They showed promise for this new drug. Those who received this AMX0035 experienced a significant slower progression of ALS than those who received the placebo. In terms of side effects, the drug presented itself as well-tolerated with a better benefit to risk balance. Read more about the CENTAUR phase 2 results here.

The Crucial Role of ALS Advocates

As soon as the results of phase 2 were released for AMX0035, ALS advocates jumped into action. In a team effort with I AM ALS, the ALS Association issued a petition. It urged the FDA and the drug company to make the treatment widely available as soon as possible. When the average lifespan is just 2 – 5 years after an ALS diagnosis, we can’t wait!

That’s just what ALS advocates communicated to the FDA just earlier this year in May. Eight ALS representatives from across the United States hosted a We Can’t Wait Action Meeting with the FDA. The meeting urged the FDA to act swiftly when it comes to approving new drug therapies for those living with ALS.

Our advocates play just as much as a role in the development and approval of new drugs as does the funding provided by generous supporters. With both these functions working in tandem, we can only hope for speedy approvals of future drug treatments.

What Comes Next?

Amylyx is currently conducting a third clinical trial (PHOENIX) of AMX0035; however, they can concurrently submit the NDA. It’s estimated that the drug company will submit this application sometime in the Fall 2021.

Following the application submission, the FDA will determine if they want to grant the new treatment approval. Or, contrarily, the FDA could require an additional study. This review process will take several months from the time of submission. In addition to the United States, Amylyx has also filed for approval of AMX0035 in Canada and the European Union.

In the meantime, the ALS Association plans to put pressure on the FDA to approve this treatment as soon as possible.

Read the full press release

View the we can't wait action meeting

Read the FDA's response to the we can't wait action meeting

Filed Under: News, Research, Research News Tagged With: ALS drug, ALS treatment, Research

Advancing Research: The HEALEY ALS Platform Trial

August 16, 2021 by Catherine Nodurft Leave a Comment

In 2020, the ALS Association, in partnership with Massachusetts General Hospital, launched an innovative approach to research, the HEALEY ALS Platform Trial. In most clinical trials, a single drug is tested, and participants cannot be enrolled in more than one trial at a time. The HEALEY ALS Platform Trial enables us to test multiple proposed drug treatments at once. This is a model that has been successful in cancer research. It accelerates our search for effective treatments for people living with ALS by allowing investigators to test more drugs, increase patient access to trials, and reduce costs by quickly and efficiently evaluating the effectiveness of multiple therapies. There are now 54 test sites nationwide, three of which are in Texas.

Texas Neurology was one of the first five initial sites for the new model. “This is big. I’ve been doing trials since the early nineties. The average trial takes 8 years. Going through platform methodology shortens it to 2-3 years,” states Dr. Daragh Heitzman, clinical director at Texas Neurology. Dr. Heitzman was recently appointed to the HEALEY ALS Platform Trial Executive Committee, as the first physician investigator to join an elite group of scientists.

“What’s different about this trial is that the placebo group is being shared for all five drugs, such that the number of participants who actually get a drug is dramatically increased. So, it’s a lot quicker to get to an answer, more patients are getting drugs, and less getting a placebo.”

Trial participants will have the option to continue treatment for at least a year, and if the drug shows promise during the six-month trial, the FDA could potentially fast-track its approval, getting a crucial treatment to people living with ALS.

Texas HEALEY ALS Platform Trial Sites

  • The ALS Clinic at Texas Neurology in Dallas
  • Houston Methodist ALS Clinic
  • The ALS Clinic at UT Health San Antonio

Read more about Dr. Heitzman and the clinic at Texas Neurology

How ALS Patients Can Help with Research

Filed Under: Research, Research News Tagged With: ALS drug, ALS Research, ALS treatment

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

June 3, 2021 by Rhema Jones 1 Comment

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

Filed Under: Advocacy, News, Research Tagged With: advocacy, ALS Advocacy, ALS Research, ALS treatment, FDA

Your Support Makes a Real Impact

December 29, 2017 by Tanner Hockensmith Leave a Comment

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.

[Read more…]

Filed Under: Fundraising Tagged With: als, ALS Advocacy, ALS awareness, als clinics, ALS Research, ALS Texas, ALS treatment, clinics, patient services

ALS Texas: 2017 By the Numbers

December 29, 2017 by Tanner Hockensmith Leave a Comment

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.

[Read more…]

Filed Under: Fundraising Tagged With: als, ALS awareness, als clinics, ALS Texas, ALS treatment, clinics, Donate, Lou Gehrig's Disease, pals, patient services

Letter from the Executive Director: Year in Review

December 26, 2017 by Tanner Hockensmith 1 Comment

Executive Director Tanner Hockensmith and his family

Texas is big, really big. Our friends at Texas Humor stated that “if you drive long enough through Texas, you still might not get all the way through it.” As Texans, we pride ourselves on the sheer size of our great state.

However, its sprawling cities, growing suburbs, and vast rural areas pose a real challenge when we think about access. At ALS Texas, we believe that everyone living with ALS deserves to have access to top-notch clinical care, programs and resources that increase quality of life, clinical research studies, and an ALS community advocating for change.

[Read more…]

Filed Under: News Tagged With: advocacy, als, ALS Advocacy, ALS awareness, als clinics, ALS Research, ALS Texas, ALS treatment, Donate, Lou Gehrig's Disease, national als advocacy day, pals, patient services, Public Policy

Support Plays Important Role in Living with ALS

December 22, 2017 by wpengine Leave a Comment

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.

[Read more…]

Filed Under: Inspiring PALS, Stories Tagged With: als, ALS awareness, als clinics, als stories, ALS Texas, ALS treatment, clinics, diagnosis, Donate, Lou Gehrig's Disease, pals, patient services, support groups

Austin Family Grateful for Outstanding Support on Their ALS Journey

December 18, 2017 by wpengine 1 Comment

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.

[Read more…]

Filed Under: Inspiring PALS, Stories Tagged With: als, ALS awareness, als clinics, ALS drug, als stories, ALS Texas, ALS treatment, Austin, clinics, diagnosis, Donate, Lou Gehrig's Disease, Max's Ride, pals, patient services, san antonio, walk to defeat als

San Antonio Family Learns to Live with ALS

December 12, 2017 by wpengine 1 Comment

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.

[Read more…]

Filed Under: Inspiring PALS, Stories Tagged With: als, ALS awareness, als clinics, ALS News, als stories, ALS Texas, ALS treatment, clinics, diagnosis, Donate, fundraising, ice bucket challenge, Lou Gehrig's Disease, pals, patient services, san antonio, walk to defeat als, why we walk

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

December 6, 2017 by wpengine 3 Comments

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.

[Read more…]

Filed Under: Stories Tagged With: advocacy, advocate, als, ALS Advocacy, als clinics, ALS drug, ALS Research, als stories, ALS Texas, ALS treatment, clinical trial, clinics, diagnosis, disaster relief, Donate, houston, hurricane, Lou Gehrig's Disease, national als advocacy day, pals, patient services, Public Policy, support groups

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