As 2019 winds down, we look back on some of the important progress made this year in the fight to change the future of ALS. With the hard work and help from so many across the ALS community, the ALS Association was able to make great strides in our key mission areas, bringing us one step closer to our vision of a world without ALS.
Our home has always been filled with family, friends, and joyful celebrations during the holiday season. It’s a time to connect with loved ones and create lasting memories. After my dad was diagnosed with ALS in March of 2017, creating holiday memories became especially important for our family. The average life expectancy for someone with this disease is 2 to 5 years, so we understand that every moment we spend together is precious.
Court Ruling leaves Affordable Care Act’s (ACA) provisions in place, including protections for pre-existing conditions for people with ALS and other Americans. But the court keeps the long-term future of ACA in limbo.
A 2020 federal spending agreement reached Monday between House and Senate negotiators would fully fund key spending priorities of The ALS Association and its advocates. ALS advocates have sent 13,800 letters and 3,600 tweets, and held more than 700 meetings in the past year to secure full federal funding of ALS research.
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.
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?
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.
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.
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.) We sat down with Jen earlier this year to talk about caregiving and how ALS impacts 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.