We are pleased to share our 2021 Mid-Year Report, detailing the work and achievements that have shaped the first half of this year. You will see that for all of the challenges of the pandemic, we have successfully maintained focus on mission delivery and innovation, pledging to do “whatever it takes” to bring us closer to a cure for ALS and to make ALS a livable disease.
‘Livable’ is a new word in our community’s lexicon. For us, livable means that until we have cured ALS, we are committing to
- Leading the way to generate more research and more clinical trials to ensure that until there is a cure, people with ALS will live longer
- Leading the way to improve and deliver state of the art care and assistive technologies to provide better quality of life for people with ALS
- Identifying risks, starting treatments as early as possible and looking at ways to prevent new cases of ALS in families that are genetically predisposed to the disease
To be clear, a world without ALS is our vision and our highest priority. But we know that ending ALS is a complex undertaking given the heterogeneity of the disease and the devastating toll that it takes on individuals and families who are facing this diagnosis today. Making ALS a livable disease is a critical interim step on our ultimate journey to cure all manifestations of the disease once and for all.
The work detailed in our 2021 Mid-Year Report touches all aspects of our mission: research, care services and advocacy and ranges from holding the FDA accountable to make promising drugs more accessible more quickly to finally convincing the legislature to waive the waiting period for people with ALS to access their social security disability benefits (after a 24-year effort on Capitol Hill!).
None of these accomplishments would be possible without you. We deeply appreciate the support, advocacy and collaboration of the ALS community. We are grateful to all of you for joining us in doing whatever it takes to cure ALS and provide the highest standards of care, service and support for those who need it today.
Comments
I was diagnosed with bulbar ALS at 81 years old,
It has been a rough year.
I’m was diagnosed in 2016 for PLS, now due my hand atrophy is ALS, I like to enjoy my life with my kids, family and friends.
I’m 56 and want to have many more adventures with my love ones. Don’t stop looking for a cure?❤️
I was first diagnosed with peripheral neuropathy in 2018. later observations and emergent symptoms led to an August 2020 ALS diagnosis. We have home care assistance and I have regular PT, OT and Speech therapy visits. I have a power wheelchair and a speech augmenter device (Tobii Dynavox). All in all, I feel well taken care of. A big Thank You to all those attending me and all others affected by ALS
Join the conversation. Please comment below.