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ACT for ALS Act Signed into Law, Bringing Hope to the ALS Community

December 23, 2021 by Rhema Jones Leave a Comment

BREAKING ALS NEWS

act-for-als

ACT for ALS Act Signed into Law, Bringing Hope to the ALS Community

Today, on December 23, 2021, we’ve reached a groundbreaking milestone for the ALS community. President Joe Biden has just signed the Access to Critical Therapies (ACT) for ALS Act into law. The Senate voted unanimously to pass the Act on December 16, with it previously passing in the House 432-2 on November 4.  This new law is over a year and a half in the making, being first introduced in June 2020. Since then, countless ALS advocates across the country have contacted elected officials over 30,000 times in support of the Act!

To see such tremendous support from our elected officials is proof that there is strong momentum in the fight against ALS. This law is a game-changer not only for those living with the disease, but also the future of ALS research.

Here’s everything you need to know about the two most important sections of ACT for ALS:

Increased Funding for ALS Research

One of the largest hurdles to ALS research is funding. ACT for ALS will alleviate some of that burden by providing researchers the support they need to study the disease. Section 5 of Act for ALS establishes a new Rare Neurodegenerative Disease Grant Program at the FDA.

Through this program, the FDA will award grants and contracts to both public and private entities to cover research costs. The funding would benefit not only ALS research, but also research for other rare neurodegenerative diseases in children and adults.

Specifically for ALS research though, ACT for ALS has secured $100 million in funding each year for ALS research (for FY2022 – FY2026). This is with the caveat that funding must be appropriated by Congress on an annual basis. This funding brings us one step closer to better diagnostic practices, treatments, preventatives, and ultimately a cure for ALS.

Expanded Access to Therapies and Treatments

Even with growing number of clinical trials for ALS, many patients are unable to participate. This causes many to miss their chance at potentially life-saving treatments. Section 2 of ACT for ALS aims to change this through the Grants for Research on Therapies for ALS program. It expands access to experimental treatments for patients who would otherwise be ineligible for ALS clinical trials.

These expanded access drugs are not covered by insurance, making federal funding crucial. This program would provide the necessary funding to entities for these investigational drugs. It does, however, require applicants to demonstrate that their expanded access program will not interfere with ongoing clinical trials.

What Comes Next?

ACT for ALS puts in place a long-term commitment on government entities in the fight against ALS. The FDA is now required to publish an ALS and Other Rare Neurodegenerative Disease Action Plan within six months. This document must detail how the FDA plans to support the development treatment to improve or extend the lives of people with ALS and other rare neurodegenerative diseases.

ACT for ALS also requires the Government Accounting Office (GAO) to publish a report within four years to the House Energy and Commerce Committee and the Senate Health, Education, Labor, and Pensions Committee. This report will review the performance of the new expanded access program and FDA research program. Additionally, the law creates public-private partnerships for these diseases, bringing together the NIH, FDA, and other entities in the search for treatments and a cure.

This amazing victory would not have been possible without the support of the countless ALS advocates across the country. We are also inspired by the brave people living with ALS who used their voice to make this a reality.

The ALS Association in tandem with I AM ALS, and the Muscular Dystrophy Association are deeply committed to advocating for those living with ALS. With this and the immense bipartisan support of ACT for ALS, it demonstrates that we are stronger together as we journey towards a world without this terrible disease.

Together, we can find a cure!

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Filed Under: Advocacy, News Tagged With: advocacy, ALS News

Telehealth Coverage for Speech Therapy Services Extended through the Duration of the COVID-19 Pandemic

April 9, 2021 by Rhema Jones Leave a Comment

In a huge win for the ALS community, the Centers for Medicare & Medicaid Services (CMS) expanded telehealth coverage for speech therapist services for the duration of the COVID-19 pandemic. This victory was made possible through the collaboration of the ALS Association and the American-Speech-Language-Hearing Association (ASHA).

Kathleen Sheehan, Vice President of Public Policy at the ALS Association shared, “These changes will allow speech therapists at ALS clinics and throughout the country to continue treating patients in the safety of their homes and cover services that can be done effectively using telehealth.”

Now there are FIVE critical services available via telehealth for people with ALS including clinical care for swallowing function and evaluations for speech-generating devices. These services are critical to people living with ALS and the day-to-day challenges they face.­

Prior to the COVID-19 pandemic, telemedicine was not widely available because of virtual platform restrictions and insurance barriers. Widespread access to telehealth became an urgent need for those with ALS and other vulnerable groups as the pandemic progressed and clinics closed.

The ALS community, ALS Association and other disease organizations advocated for new guidelines to remove the barriers to telemedicine. Because of this, Texans with ALS were able to access care across the state that was not possible before COVID.  But the fight is not over yet.

These guidelines will expire at the end of the current public health emergency, estimated to last through the end of 2021. However, the ALS Association is dedicated to continuing the fight for permanent expansion of these guidelines to provide access to telehealth services post-COVID-19. This is just one of several public policy priorities for 2021.

We have recently seen promising development on Capitol Hill in the progression of this fight. The ALS Association endorsed the Telehealth Modernization Act through written testimony in March. This act would make telehealth access permanent for Medicare beneficiaries. This would not only impact access to remote care, but also access to remote clinical trials in the search for a cure for ALS. Read the full announcement here.

View our 2021 Public Policy Priorities

Become and ALS Advocate

Filed Under: Advocacy Tagged With: advocacy, ALS News, COVID-19

The New COVID-19 Vaccines and What They Mean for People with ALS

December 18, 2020 by Steve Morse 1 Comment

Last Updated January 8, 2021

We know Texans with ALS and their caregivers may have questions about the new COVID-19 vaccines. Our team at the ALS Association of Texas is closely monitoring the development of these vaccines and how they are being distributed across the country. Our highest priority remains the safety and well-being of people with ALS, their families and caregivers. Keep reading to see the latest updates on the two new COVID-19 vaccines.

The FDA Has Approved Two New Vaccines

The FDA approved the Pfizer vaccine on December 11, 2020, issuing it for emergency use authorization. The Moderna vaccine was approved for emergency use on December 18, 2020.  Each state is responsible for their distribution plans, but due to limited supplies, both vaccines are being distributed first to front-line health care workers, and residents and staff of nursing homes and other long-term care facilities. The CDC suggested that the initial wave of vaccines be administered in the following order of priority:

  • Frontline health care workers and adults in long term facilities
  • Essential workers
  • Adults with high-risk medical conditions and adults older than 65

According to the Texas Department of State Human Services, “Texas continues to receive doses of the Pfizer and Moderna COVID-19 vaccines, and is distributing statewide to hospitals, pharmacies, local health departments, freestanding ERs and other clinics.” Read more about the vaccine distribution plan for Texas here.

View a map of vaccine providers in Texas. 

Do These New Guidelines Include People with ALS?

Specific diseases like ALS are not listed as a high-risk medical condition in the CDC’s guidelines regarding the first three-part phase distribution of the vaccine. The ALS Association is contacting U.S. governors to ensure that people with ALS are included in the third category based on the respiratory complications from the progression of the disease and the risk it carries.

Is the Vaccine Safe for People Living with ALS?

The ALS Association continues to consult with doctors specialized in ALS treatment and are encouraged by the safety and efficacy data. However, we still strongly advise that Texans with ALS consult with their physicians to discuss taking the vaccine as soon as supplies in Texas allow.

How Do I Prevent Exposure to COVID-19?

Despite the release of the new vaccine, cases are still growing in Texas. Keep yourself and your families safe by following the protocols recommended by the CDC. This includes, social distancing and wearing masks when you’re near people outside of your household, frequent handwashing, and avoiding crowds.

For the most recent information about the coronavirus (COVID-19), The ALS Association recommends that you reference the websites for the Centers for Disease Control (CDC), the World Health Organization (WHO), and state and local health authorities.

For specific information about symptoms you may be experiencing or questions about personal exposure as someone living with ALS or as a caregiver, please contact your physician directly.

If you have more questions about the vaccine and it’s distribution, reach out to our team using the Contact Us page!

FAQ's about COVID-19 and ALS

FAQ's about COVID-19 and ALS

How We're Continuing to Serve People During COVID-19

Filed Under: News Tagged With: ALS News, COVID-19, COVID-19 vaccine, people with als

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

November 27, 2018 by Jacque Amadi Leave a Comment

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.

[Read more…]

Filed Under: Fundraising, Research Tagged With: ALS News, ALS Research, ALS Texas, fundraising, walk to defeat als

New Leadership Model Enhances Mission Focus in Greater Houston Area

June 27, 2018 by Elise Bernard 1 Comment

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.

[Read more…]

Filed Under: News Tagged With: als, ALS News, ALS Texas, fundraising, patient services

ALS Caregiver Recognized for Excellence in Caregiving

June 20, 2018 by Elise Bernard 1 Comment

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.

[Read more…]

Filed Under: Stories Tagged With: als, ALS awareness, als caregiver, ALS News, als stories, ALS Texas

ALS Texas Implements New Leadership Model to Manage Texas-Sized Growth

May 25, 2018 by Greg Hill Leave a Comment

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.

[Read more…]

Filed Under: News Tagged With: als, ALS News, ALS Texas, fundraising, patient services

Raise Your Voice: Together, We Will Be Heard

May 1, 2018 by Tanner Hockensmith Leave a Comment

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.

[Read more…]

Filed Under: News Tagged With: advocacy, advocate, als, ALS Advocacy, ALS awareness, ALS News, ALS Texas, Donate

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

Rio Grande Valley Multidisciplinary Clinic Opens at Doctor’s Hospital

October 27, 2017 by Elise Bernard 1 Comment

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.

[Read more…]

Filed Under: News Tagged With: als, ALS awareness, als clinics, ALS News, ALS Texas, ALS treatment, clinics, pals, patient services

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