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

March 17 Update from ALS Association President and CEO Calaneet Balas

Members of the ALS community,

I want to provide you with an update on how The ALS Association is serving the ALS community as COVID-19 progresses. We know this is a concerning time for many and we want to assure you that we are continuing our urgent mission to find treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.

Continue reading March 17 Update from ALS Association President and CEO Calaneet Balas

ALS Association Joins Coalition Fighting to Protect Vulnerable Populations in Face of COVID-19

Letter to Congress calls for swift action to expand access to health care and facilitate social distancing

The ALS Association cosigned a letter with 27 patient and consumer organizations calling on Congress to act decisively to slow the spread of the coronavirus that causes COVID-19, particularly among vulnerable populations. 

People with pre-existing conditions are at increased risk of infection and adverse health outcomes from COVID-19. For this reason, it is essential that any legislative package taken up in the Senate ensures that the health care system has adequate capacity to provide necessary care to patients with pre-existing conditions and robustly addresses public health needs. 

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“You Got to Take Every Day with Grace and Dignity”: Liz Murray on Living with ALS

In summer 2014, as the ALS Ice Bucket Challenge was raising unprecedented awareness and funds for the fight against the disease, Liz Murray did not know that she was about to become part of the ALS community. Her diagnosis was confirmed later that year. 

Liz spent her career as a nurse in a VA clinic where she cared for numerous ALS patients over the years. She says the experience informed her suspicion that her symptoms were consistent with the disease even before her diagnosis was confirmed. 

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“You can’t give up”: Christian James on Living With ALS

When Christian James was heading to the neurologist at the University of Cincinnati Medical Center, his son, a student at UC at the time, met up with him for the appointment. 

“I thought, that’s fine. It’s not going to be that big of a deal,” he said. 

Christian says he and his wife, Kim, knew the worst-case scenario was an ALS diagnosis, which was confirmed that day in 2015. 

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New Weekly Podcast, Connecting ALS, to Share Stories of Hope

On March 5, The ALS Association launched a weekly podcast, Connecting ALS, that will shine a national spotlight on the people, research, and policy issues central to the fight against ALS. 

Host Mike Stephenson, director of marketing and communications for The ALS Association MN/ND/SD Chapter, will be joined by co-host Jeremy Holden, communications director for The ALS Association, to discuss the latest in ALS research and technology developments, share updates and highlights of the Association’s advocacy efforts, and share personal stories that will resonate across the nationwide ALS community and beyond. Connecting ALS began in 2019 as a monthly podcast hosted by Stephenson and produced by Garrett Tiedemann for the MN/ND/SD chapter. 

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A Deeper Look into ALS Association Efforts to Speed Approval of Gene Therapies

By Neil Thakur, Ph.D.
Executive Vice President, Mission Strategy, The ALS Association

We are getting enthusiastic feedback and questions about our partnership with Project ALS to fund a clinical research project for jacifusen, an experimental therapy being developed at Columbia University’s Eleanor and Lou Gehrig ALS Center for FUS-associated ALS. We thought it would be helpful to describe the strategy underlying the project. 

Jacifusen is an experimental treatment based on antisense technology, a way to silence genes. Jacifusen has not received FDA approval, and we do not know if it works. It is a variation of the same gene silencing approach being tested in more common ALS genes, specifically SOD1 and C9orf72. 

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