In a lot of ways, 2021 has been a roller coaster ride. For many in the ALS community and beyond, the year began on a hopeful note with COVID vaccines becoming more and more available. For a few weeks in early summer, it looked like the pandemic might be behind us. But as summer rolled on and eventually turned to fall the word “variant” entered our vocabulary is a big way, and as we near the end of December we find ourselves back in a world of uncertainty.
For the ALS community, there has been much to focus on beyond COVID. Locally, our Chapter rung in 2021 with a change in leadership, as Katie McGovern succeeded Maureen Barber Hill as president and CEO upon her retirement. We also learned in early 2021 that our friend and person with ALS Pattie Hamlin was to be honored with the ALS Association Hero Award for her tireless efforts in support of our Chapter as an ALS advocate, fundraiser, and ambassador. Pattie was honored virtually during the ALS Association 2021 Leadership Conference in February.
In the world of ALS advocacy, meetings with local and national legislators were once again held virtually in 2021. And while the lack of in-person contact has been a challenge, virtual calls have allowed more people with ALS to be part of these meetings. The message delivered by ALS advocates clearly had an impact, as just last week the Accelerating Access to Critical Therapies (ACT) for ALS Act passed both the House and Senate and will soon be signed into law. Among the provisions of the ACT for ALS Act are two new grant programs to fund an expanded access in certain circumstances for individuals not otherwise eligible for ALS clinical trials and to fund an FDA research program to find treatments and a cure for ALS and similar diseases.
On the research front, 2021 was a year of progress. Among the most promising news was Amylyx Pharmaceuticals submitting a New Drug Application (NDA) for AMX0035, which has shown to be safe and effective at slowing down ALS progression, and in an open label extension study showed a statistically significant 6.5 month increase in survivability. In addition to the great promise AMX0035 has shown, The HEALEY ALS platform trial—the first study to test several therapy candidates for ALS simultaneously—has completed enrollment for at least two of its first three regimens. For those wanting to keep up to date on the latest in ALS research, in 2021 the ALS Association started the Research Matters monthly e-newsletter. You can subscribe to Research Matters here.
In great news for ALS awareness, June 2, 2021, saw the first Lou Gehrig Day across Major League Baseball, as it will be each June 2 going forward in honor of Lou Gehrig and in support of the fight to end ALS.
Here on ALS Connect, we spent some time hearing from different members of the ALS multidisciplinary care teams who care for people with ALS at the ALS clinics across our region. We explored the benefits of palliative care for people with ALS, and learned how two authors with a close connections to ALS have found ways to give back to the fight to end ALS through their writing. And our friend Scott Liniger took us all along with him on his journey as an ALS patient caregiver for his partner Tammy Hardy for six years in his series “Dispatches From a Former Caregiver” that explored the parts of his and Tammy’s story that tended to the more irreverent side of their journey.
We are hopeful that 2022 will bring us more promising news from ALS research and even more financial commitments from lawmakers because of the efforts of ALS advocates. If 2020 and 2021 have taught us anything, it is that we should expect the unexpected, and we are hopefully that unexpected breakthroughs will point to more treatments in the near future. While we continue to live through uncertain times, we are certain that the ALS community will continue to join together is support of people with ALS in any way possible. Together, we will continue to find a way, because we can’t wait in the fight to end ALS. Thank you for being with us on the journey in 2021, and we look forward to being with you in 2022.