The Jane Calmes ALS Scholarship Fund Kicks Off Year Two

The ALS Association is accepting applications for the Jane Calmes ALS Scholarship Fund, which was established in 2019 to support post-high school education for students whose lives have been impacted by ALS. Scholarship recipients receive up to $5,000 per year to help cover the cost of education.

In its inaugural year, the fund awarded $225,000 in scholarships to 45 students nationwide whose personal or family finances were compromised by the financial burden of ALS. Continue reading The Jane Calmes ALS Scholarship Fund Kicks Off Year Two

Questions and Answers about COVID-19 and Its Impact on People with ALS

March 23, 2020 – We have received many questions about COVID-19 and its impact on people with ALS, their families, and their caregivers. We convened a panel of volunteers and staff to answer these questions – their bios are at the bottom. This situation is rapidly changing. We will update this FAQ as we receive more questions and more current information. If you have questions, please email questions@alsa-national.org.

Also, if you would like to hear our panel discuss these issues on a podcast, please check out the March 19 episode of Connecting ALS at ConnectingALS.org.

Continue reading Questions and Answers about COVID-19 and Its Impact on People with ALS

Medicare Coverage for Telehealth Visits Expanded During COVID-19 Pandemic

In response to congressional action, The Centers for Medicare and Medicaid Services notified providers of a new option for expanded Medicare coverage for telehealth visits.  These changes temporarily remove originating site and geographic restrictions from coverage of telehealth under Medicare fee-for-service.  This coverage applies to all Medicare-approved telehealth services.

The government temporarily waived restrictions on telehealth in Medicare fee-for-service to enable more seniors to access care from their own homes during the public health emergency brought on by the coronavirus. The provisions were included in the Coronavirus Preparedness and Response Supplemental Appropriations Act.

The telehealth waiver applies to treatment of all diagnosis during the Public Health Emergency, not just COVID-19-related visits.

Continue reading Medicare Coverage for Telehealth Visits Expanded During COVID-19 Pandemic

Target ALS and ALS Association Announce New TDP-43-Focused Biomarker Initiative

Target ALS and The ALS Association recently announced a new partnership committed to the discovery of biomarkers for ALS. Structured as a precompetitive initiative between scientists in academia and the pharmaceutical/biotech industry, Target ALS and The ALS Association will fund two projects to better understand the chemical and physical structure of the TDP-43 protein, which is present in most cases of ALS. Ideally, the project will generate new tests to reliably measure its potential as a biomarker.

The discovery and advancement of biomarkers has dramatically advanced medical care for diseases such as cancer and HIV, among others. However, the same advancement in ALS remains elusive. While some genetic markers for ALS have been identified in recent years, such as mutations in the C9ORF72 gene, their impact is limited to only a small fraction of the patient population.

Continue reading Target ALS and ALS Association Announce New TDP-43-Focused Biomarker Initiative

The ALS Association and coalition partners call for quick review of ACA by SCOTUS

The ALS Association and 23 partners that represent millions of patients across the country released a statement strongly supporting the petitions filed today by state attorneys general and by the U.S. House of Representatives that seek expedited U.S. Supreme Court review of last month’s Texas v. United States ruling. The ruling endangers patient access to adequate, accessible and affordable health care.

Continue reading The ALS Association and coalition partners call for quick review of ACA by SCOTUS

Remembering Pete Frates, Co-Founder of the ALS Ice Bucket Challenge

With heavy hearts, The ALS Association joins the ALS community in celebrating the legacy and mourning the loss of Pete Frates, who died Monday at age 34 after a seven-year battle with ALS.  

Pete lived a Hall of Fame life. 

Continue reading Remembering Pete Frates, Co-Founder of the ALS Ice Bucket Challenge

GUEST BLOG POST: The Promise of CuATSM for ALS and the Challenges of Moving from Mice to Humans

Note: The ALS Association was recently contacted by Dr. Joe Beckman, Ph.D., who had been following recent conversations online about CuATSM and wished to help provide further context about the compound and potential treatment. 

In 2016, my colleagues and I published some remarkable results of a new drug called CuATSM in a mouse model of ALS. Moving CuATSM from mice to humans is a long and difficult road that involves the cooperation and scrutiny of many people. The checks and balances are critical to balance the risks with the benefits of any new therapy. 

For several years, we have been overwhelmed with the patient requests from young mothers and fathers with kids and family members with parents who are anxious to try CuATSM and learn of any possible treatment. It is hard to convey the horror of this disease, and I understand their frustration. A good friend from my time in the Army 40 years ago has developed the disease. After 25 years of work on the disease, I feel I have failed so far. This disease is humiliating in its complexity. The one lesson I have learned is that there are no simple answers or short cuts. 

Continue reading GUEST BLOG POST: The Promise of CuATSM for ALS and the Challenges of Moving from Mice to Humans