The ALS Association, our partner ALS organizations, and the wider ALS community are all hopeful that several therapies currently in Phase 3 clinical trials will prove to be successful in slowing, halting, or reversing ALS.
One of the therapies now in Phase 3 trials, NurOwn, has been the subject of considerable discussion on social media. Some of what is being stated on social media is unfortunately not accurate, and risks misleading people with ALS and their caregivers.
Continue reading NurOwn and the Therapy Development Process
With many ALS drugs now in phase II and III clinical trials, The ALS Association is considering strategies that will ensure any new treatments are accessible and affordable. We used our second ALS Roundtable to explore several important questions for our community including: How will these new therapies get paid for? How can people access to them? How long will it take to get access?
Continue reading ALS Roundtable on Ensuring Access to New Therapies for People With ALS
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
November is National Family Caregivers Month, a time to recognize and honor the tremendous contributions of family caregivers. Throughout the month we have been sharing stories of caregivers in the ALS community. Caregiving is a full-time job, and many caregivers also maintain full time jobs while dealing with the financial and emotional stress that comes with being a caregiver.
Bill Dodge, who served as a caregiver to his wife, Laura until her ALS journey ended earlier this year, remains a passionate advocate for ALS funding and public policies. We sat down to talk to him about why he continues to fight earlier this year.
Continue reading How Gardening is Part of Caregiving: Bill Dodge’s Story
Jen LeVasseur’s caregiver journey began while she was still a newlywed. Her husband, Noel, was diagnosed with ALS just 17 months after their wedding.
Noel has two daughters from a previous marriage, Jen two sons. (They embrace the Brady Bunch, blended family analogy.)
Continue reading Caregiver Opens Up About ALS and the Holidays
Lynn Hogan became a caregiver early in her relationship her fiancé, Steve Ziegler.
“On our first date we went out and he was sitting next to me and he said, ‘You might notice — don’t get weirded out or anything — but you might notice some twitching, weird stuff going on with my arms. We don’t know what it is yet. But one of the things it could be is ALS,’” she recalled.
Continue reading Bride-to-be Caregiver Reframes Future with a Fiancé Living with ALS
The ALS Association submitted a report to the FDA documenting the real impact ALS has on people living with the disease and their caregivers in order to inform the development of treatments. The information in the report draws from a survey of people living with ALS.
The ALS Voice of the Patient Report is a groundbreaking document that gives the FDA and other key stakeholders, including drug developers, health care providers, and insurance companies, data from people with ALS and caregivers about the everyday impact and burden the disease has on peoples’ daily lives, their experiences with currently available treatments, and their hopes for future ALS therapies. This information is also intended to help provide context of the disease burden to the FDA to inform the Agency’s review of new drug applications. This report speaks loudly and clearly to the immense unmet medical need we all are working to confront.
Continue reading Groundbreaking ALS Voice of the Patient Report Submitted to FDA