An ALS diagnosis is not only devastating to the person receiving it, but to their entire family, and kids are all too often the collateral damage. The disease forces many kids to pitch in as caregivers and often delay their educations. Kids who serve as caregivers often talk about feeling isolated and unsupported by their peer groups.
Carianne Meystrik has been living with ALS for 22 years – all while raising 4 children. In honor of Mother’s Day, we reached out to Carianne to check in on her ALS journey and her family, and to get her reflections on the impact ALS has had on motherhood.
Gary Trosper was a transportation executive before he was diagnosed with ALS in 2015. After two years, he was forced to retire due to his symptoms, but he knew he didn’t want to just sit around: he wanted to make a difference. Acting as an advocate and taking action for himself and others is very important to him.
In recent years Giving Tuesday has emerged as a preeminent day in late November for everyone around the world to commit to charitable giving as a way to give back to those in need during a season defined by giving. On May 5, in recognition of the crisis charitable causes face in the face of the global pandemic and economic shutdown, a new opportunity to come together in support of your community will be held: #GivingTuesdayNow.
May is ALS Awareness Month. Of course, this year is different than past years as the world has changed significantly in the face of a global pandemic. However, ALS doesn’t stop and neither will we. During the month of May we have a full calendar to increase awareness of ALS and of the severe physical, emotional, and financial burdens it creates for people living with the disease and their families. We’ll be talking about the disease and its burdens in the context of the COVID-19 public health crisis, which exacerbates the difficulties people living with ALS already face in number.
Social distancing and stay-at-home orders in response to the COVID-19 pandemic are upending many facets of daily life. In recognition of Occupational Therapy Month, we checked in on ways this critical piece of multidisciplinary care can continue during quarantine and innovative ways telehealth can be adopted by occupational therapists.
The ALS Association, in partnership with the American Brain Foundation and the American Academy of Neurology, has awarded the 2020 Sheila Essey Award for ALS research to Guy Rouleau, M.D., Ph.D., director of the Montreal Neurological Institute and Hospital and chair of the Department of Neurology and Neurosurgery at McGill University. The award recognizes significant research contributions in the search for the cause, prevention of and cure for amyotrophic lateral sclerosis (ALS). Since 1996, The ALS Association and the American Academy of Neurology have jointly chosen recipients of the award.
Before he was diagnosed with ALS in June 2018, Troy Fields was a hardworking businessman, devoted husband, and father. He had a job that he loved as a manager for a multinational company with responsibilities in Latin America. He traveled a lot, and when he wasn’t working, he was spending quality time with his family. But in 2017, he started to sense something was physically wrong.
Stay-at-home orders in response to the COVID-19 pandemic have upended many aspects of life, not least of which is volunteerism. And while the number of people volunteering has been declining in recent years, those who do volunteer are finding unique ways to stay engaged despite the coronavirus.
The ALS Association is excited to announce $2.5 million in grants to help develop promising new treatments for people living with ALS.
The grants are supported by the Association’s Lawrence and Isabel Barnett Drug Development Program, which supports drug discovery research in both academia and industry to develop new drug therapies and test them in a preclinical setting while moving those therapies closer to clinical use.
National Volunteer Week kicks off today. The weeklong celebration of volunteers began in 1974 and honors the people who come together and volunteer their time and resources to solve some of the world’s greatest problems.
Until he was diagnosed, Bob Palucki didn’t really know anything about ALS. “It really didn’t affect anybody in my family,” he says. “We’ve come so far in all the different medicines for all the different diseases and to think that we’ve got a disease as terrible as this and there’s no cure for it, there’s not even anything that can stop it from progressing.”
The ALS Association joined with 32 consumer and patient advocacy organizations in calling on Congress to enact legislation in response to the COVID-19 pandemic that protects and expands access to quality, affordable health insurance.
The ALS Association today announced a three-year, $652,543 commitment to support new collaborative initiatives that will encourage therapeutic pipeline development, improve ALS trial efficiency and quality, and enhance the patient experience with trial access, recruitment, and retention efforts. Activities will take place at the Sean M. Healey & AMG Center for ALS at Mass General in collaboration with the Barrow Neurological Institute and the Northeast ALS Consortium (NEALS).
The Medicare program at the Centers for Medicare & Medicaid Services removed noninvasive ventilators from competitive bidding for durable medical equipment. The decision will keep the devices out of competitive bidding for at least three years and is a victory for ALS advocates. The ALS Association and its partners have led an intense lobbying campaign against competitive bidding for noninvasive ventilators for more than a year. The Medicare program cited COVID-19 in announcing the move.
With congressional leaders scheduled to begin work on additional stimulus legislation in response to the COVID-19 pandemic, The ALS Association is continuing to push to include protecting access to noninvasive ventilators (NIV) and to making sure people with ALS can access their Social Security Disability Insurance (SSDI) in the coronavirus response packages.
Tom Mountin’s ALS diagnosis came as quite a shock in August 2016. “Before that, I was a tax attorney and thinking about retirement and all of a sudden, oh, I guess we're going to accelerate this retirement,” he said.