The Pooled Resource Open-Access ALS Clinical Trials (PRO-ACT) database recently received the Healey Center International Prize for Innovation in ALS, a $50,000 prize. The database is the largest collection of ALS clinical trial data and includes de-identified records of 11,000 patients from 23 clinical trials.
Thanks to the hard work of ALS advocates, Congress has passed the Accelerating Access to Critical Therapies (ACT) for ALS Act after a unanimous vote in the Senate. The bill previously passed in the House 423-2. The bill is expected to be signed into law by President Biden.
People with ALS and their caregivers who participated in a recent ALS Focus survey said that telehealth appointments improved their quality of life by saving them time and money, and that the appointments are just as good as in-person health care visits.
Research funded by The ALS Association has found that NFL players are four times more likely to be diagnosed with ALS and die from the disease than people who never played in the league, adding to the mounting evidence of a link between playing football and ALS.
Connecting ALS recently sat down with Ann Larson to learn more about her experience as an ALS caregiver for her beloved husband Dave, and better understand the challenges she encountered during their three-year journey with the disease.
We talked with Dr. Janani Parameswaran, postdoctoral fellow from Dr. Jie Jiang’s lab at Emory University in Atlanta, to learn more about her and her ALS research focused on unraveling the underlying disease mechanism.
Debbie Petrovsky, a woman with ALS residing in Massachusetts, pens poetry to articulate her experience living with the disease. Her unique expression is unique to her experience yet offers insight for those looking to learn more about the challenges of ALS.
Holiday celebrations are times of fun, fellowship and of course, food. And, while the holidays are meant to be enjoyed, they can also be a tremendous stressor for people living with ALS and their families. Learn tips to help enjoy the holidays and delicious easy chew, easy swallow recipes the whole family will enjoy.
My husband’s ALS journey is not unique. It started with weakness in his left leg, and a few other puzzling issues which he began to note around 2010. We didn’t do anything about it until October 2012, when things got more puzzling.
When your loved one receives a diagnosis of ALS, you transition into a new role as a caregiver. This may happen gradually over time, or quickly, catching you off guard and possibly unprepared. Regardless of where you are in your caregiving journey, who better to accept advice, guidance and emotional support from than other families and caregivers who are living through similar experiences?
The Allied Professionals Forum is almost here - an educational and training event where hundreds of allied health professionals come together from around the world. Its two days of extensive presentations, networking, and workshops that always leaves us feeling exhausted but at the same time re-energized and rejuvenated from hearing about all the amazing work being done around the world.
We asked the FDA to treat the approval review process of AMX0035 with urgency. Specifically, we sent a letter to FDA asking the agency to conduct a Priority Review of Amylyx’s New Drug Application (NDA) for AMX0035 and then approve it. The Priority Review is an expedited review process, as opposed to the Standard Review process, which can take upwards of a year after the agency accepts submission of the NDA.
I can’t will the leaves to hold on to the tree for much longer, I know that. Soon, we will all have to let go. But for now, in the month of Thanksgiving, we just hang on. We continue to thank God for the gift of time and each other. But when the day comes and her spirit no longer fills that room, I surely will never be the same.
We talked with Dr. Caroline McHutchison, postdoctoral fellow from the University of Edinburgh, to learn more about her research focused on examining the presence, onset, and evolution of cognitive and behavioral symptoms, relative to motor symptom onset and diagnosis of ALS.
My husband's ALS diagnosis didn’t explain the symptoms I was seeing. I searched the internet late at night and concluded that he also had Frontotemporal Dementia (FTD). Symptoms of FTD include a loss of empathy and executive function, an increase in inappropriate actions, a lack of judgement and inhibition.
Executive Director John Hedstrom of The ALS Association Massachusetts Chapter offers a testimony to the Join Committee on Health Care Financing in support of in Support of H. 201 and S. 753, “An Act Advancing Health Care Research and Decision-Making Centered on Patients and People with Disabilities”. Read his statement on behalf of the Massachusetts ALS community here.
The Association provides free online access to a variety of options, including publications, videos, books, and informative websites that provide a wealth of easy-to-access information on important topics relevant for people living with ALS and their caregivers.