We made a promise to the ALS community—that we will make ALS livable for everyone, everywhere, until a cure is found. But it will take all of us—working together—to accomplish that goal.
It will take researchers and clinicians collaborating to find new treatments and cures. That means more clinical trials and patient participation in research. It includes finding ways to optimize treatments and care, increasing access to that care, and improving assistive technologies to help people with ALS live the way they want, with a better quality of life.
It also means we will need to prevent or delay the harms of ALS. We need to diagnose the disease sooner and find ways to identify ALS risk factors so we can prevent it altogether. And as new treatments become available, we need to fight for policies and access to allow people with ALS the chance to get the help they need sooner.
Next week, the ALS community will be coming together in Texas at ALS Nexus to work on just that.
Here are just a few of the highlights planned for this inaugural event:
- In the premiere opening session, Calaneet Balas and Dr. John Novak, Neurologist and ALS Clinic Medical Director at OhioHealth, will co-host an insightful conversation with three top experts in ALS research and care, examining the remarkable progress, challenges, and paradigm shifts that are shaping the way we approach and manage ALS today, while spotlighting the importance of increasing awareness, expanding access, and building capacity for tomorrow.
- Finding new treatments and a cure remains the key part of our mission; however, to truly make ALS a livable disease, advancing the science of prevention is critical. Michael Benatar, M.D., Ph.D., a professor of neurology at the University of Miami, will lead a panel discussion to share the work being done to delay or even prevent ALS onset.
- Dr. Kuldip Dave will lead a powerful conversation with experts exploring innovative and "next generation" approaches to finding new treatments and cures, and optimizing quality of life for people living with ALS.
- We know ALS multidisciplinary clinics provide the best level of care for people living with the disease, helping to improve and extend lives. However, due to geography, logistics, and sometimes cost, many people with ALS cannot access this crucial care, a vital issue we will be addressing. During several sessions, experts will explore actionable steps to dismantle barriers to access to ensure everyone living with ALS has access to state-of-the-art care.
- Following an independent year-long study to understand the complex needs of the ALS ecosystem and identify gaps in research and care services, the National Academies of Sciences (NAS) unveiled its recommendations on how to make ALS a livable disease within a decade. During a unique session, NAS will introduce a strategic agenda to provide greater and more equitable access to state-of-the-art multidisciplinary care, accelerate the development of more effective treatments, improve the quality of life and health of people living with ALS, and provide better support for families and caregivers.
With these and other insightful sessions on the agenda, there is sure to be something of interest for everyone in the ALS community. No topic is off-limits, and no question will go unanswered.
Join us at ALS Nexus and be a part of the conversation to help end ALS.
The complete agenda can be viewed HERE.
To learn more about ALS Nexus and how you can participate, visit our website HERE.
To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.
Join the conversation. Please comment below.