Agenda

Our goal at the ALS Association is to make ALS a livable disease for everyone, everywhere, until we can cure it. ALS Nexus furthers this goal by bringing together our ALS community to advance ALS care, global research, and advocacy.

Sessions will spotlight innovative solutions and emphasize the value of interdisciplinary collaboration, featuring experts in the clinical and research fields as well as people living with ALS and their loved ones.  

Register 

Image
Couple

Sunday, July 14

6:00 – 8:00 p.m.

Welcome Reception

Monday, July 15 

9:00 – 9:20 a.m.

Opening Remarks

Calaneet Balas, President & CEO of the ALS Association

9:20 – 11:10 a.m.

Fireside Chat - The Changing Landscape of ALS

Part 1:  

Calaneet Balas, President & CEO, ALS Association (host) 
John Novak, M.D., MS, Neurologist and ALS Clinic Medical Director at OhioHealth, ALS Association Certified Treatment Center of Excellence (host) 
Stanley Appel, M.D., Director of the Ann Kimball & John W. Johnson Center for Cellular Therapeutics at Houston Methodist Center and Director, Houston Methodist, ALS Association Certified Treatment Center of Excellence 
Don Cleveland, Ph.D., Distinguished Professor and Chair at the University of California at San Diego 
Merit Cudkowicz, M.D., MSc, Chair of Neurology at Massachusetts General Brigham

With the development and approval of new treatments along with rapid technological changes in the practice of medicine, ALS care is changing at a pace never seen before. In this session, ALS experts will guide you through 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. Join us in a collective exploration of possibilities, as we lay the foundation for a more compassionate, sustainable, and inclusive approach to caring for those with ALS. 

Part 2:  

Calaneet Balas, President & CEO, ALS Association (host) 
John Novak, Center Director at OhioHealth, ALS Association Certified Treatment Center of Excellence (host) 

Additional Speakers to be Announced  

In this deeply personal and empowering session, people living with ALS and their caregivers will share their unique perspectives on navigating the evolving landscape of ALS care and its profound implications for their future. Through candid discussions and heartfelt reflections, people living with ALS will reflect on how recent advancements, challenges, and paradigm shifts in ALS research and treatment are shaping their outlook on life and their hopes for the next generation.  Join us as we explore what making ALS livable truly means and how we turn ALS from a fatal disease into a livable one.  

11:10 – 11:25 a.m.

Break & Networking

11:25 a.m. – 12:25 p.m.

Breakout Session Option 1 - Prime Targets: What’s Next in ALS Drug Development?
Sponsored by The Barnett Charitable Foundation

Sandy Hinckley, Ph.D., VP, Head of Discovery at QurAlis
Justin Ichida, Ph.D., VP, Head of Neuroscience Research at the University of Southern California
Bernie Zipprich, Founder, Zipprich Ventures LLC, ALS Association Board of Trustees Member, and Person Living with ALS

Jeffrey Rothstein, M.D., Ph.D., Director, Robert Packard Center for ALS Research at Johns Hopkins

Two new drugs have been approved to treat ALS in the last two years. However, because ALS is so complex, more treatments are urgently needed to make it a livable disease for everyone. This session will showcase some of the exciting biological targets and pathways currently being pursued in the lab in the hope of developing new ALS therapies.

Breakout Session Option 2 - Ensuring Care for All

Ileana Howard, M.D., Associate Director of Neurology for ALS, Veterans Health Administration
Eric Anderson, M.D., Ph.D., MBA, FAAN, VP of Clinical Operations and Care Delivery, Synapticure
Terry Heiman-Patterson, M.D., Director, Temple MDA/ALS Center of Hope and Center for Neurodegenerative Diseases at Temple University School of Medicine

Multidisciplinary clinics provide the best level of care for people living with ALS, helping to improve and extend lives. However, due to geography, logistics, and sometimes cost, many people with ALS cannot access this crucial care. This session will explore actionable steps to dismantle barriers to access, from advocating for policy changes to fostering community partnerships, to ensure everyone living with ALS has access to state-of-the-art care.

12:25 – 1:55 p.m.

Lunch & Exhibit Hall Open

1:55 – 2:55 p.m.

Breakout Session Option 1 - Palliative Care for ALS: Benefits and Barriers

Ambereen Mehta, M.D., M.P.H., FAAHPM, Associate Professor, Department of Cellular and Molecular Medicine at Johns Hopkins School of Medicine
Jill Recker, LMSW, Executive Director of Ascend Hospice and Palliative Care
Kwame Adjepong, MD, Assistant Professor, Neurology & Palliative Medicine, University of California, San Francisco

While palliative care is recommended upon diagnosis, the majority of people living with ALS do not receive it, either by choice or lack of access. This session will explore the benefits and misconceptions of palliative care in the clinic and at home, discuss barriers, and identify opportunities for further clinical partnerships.

Breakout Session Option 2 - Advocacy in Action: Proactively Addressing Insurance Challenges

Michael J. Robinson, M.D., Retired Physician & Pharmaceutical Executive, and Person Living with ALS
Kim Holland, MBA, Former Oklahoma Insurance Commissioner and ALS Association Advocacy Committee Member
Kathleen Holt, MBA, JD, Associate Director, Center for Medicare Advocacy
Alan Balch, Ph.D., CEO of Patient Advocate Foundation and National Patient Advocate Foundation
Melanie Lendnal, Esq., Senior Vice President, Policy & Advocacy, ALS Association

Discovering a treatment for ALS is one thing. Ensuring people have access to that treatment is another. As more drugs and technologies are approved to treat ALS, what needs to be done to secure greater coverage and patient protection in the future?

2:55 – 3:10 p.m.

Break & Networking

3:10 – 4:10 p.m.

Plenary - Working Together to Find Treatments and Cures for ALS

Manish Raisinghani, M.B.B.S., Ph.D., CEO, Target ALS Foundation
Sharon Hesterlee, Ph.D., Chief Research Officer at Muscular Dystrophy Association
David Taylor, Ph.D., Vice President, Research and Strategic Partnerships at ALS Society of Canada
Kuldip Dave, Ph.D., Senior Vice President, Research, ALS Association

The ALS funding ecosystem is extremely complex. Our collaboration with others amplifies impact and ensures we can achieve sustained success in the fight against ALS. During this session, we will explore how nonprofits can further partner to coordinate, collaborate, and accelerate progress toward making ALS a livable disease.

4:10 – 5:30 p.m.

Break & Networking

5:30 – 7:30 p.m.

Heroes Awards Dinner
Dinner & Awards Ceremony

Tuesday, July 16

7:00 – 7:45 a.m.

ALS Ice Bucket Challenge
Located at Gaylord Texan Paradise Springs Waterpark (.25 miles away from Gaylord Texan Resort)

9:00 – 9:15 a.m.

Opening Remarks

Calaneet Balas, President & CEO of the ALS Association

9:15 – 10:30 a.m.

Plenary - Built for Speed: Strategies to Improve Clinical Trial Efficiency
Sponsored by The Barnett Charitable Foundation

Erin Fleming, Vice President, Research and Development at ProJenX
Laura Ranum, Ph.D., Kitzman Family Professor of Molecular Genetics and Microbiology and Director of the Center for NeuroGenetics at the University of Florida
Eduardo Locatelli, M.D., M.P.H., Associate Professor and Medical Director at the NSU Health Neuroscience Institute
Larry Falivena, ALS Association Board of Trustees, Person Living with ALS
Dennis Akkaya, Chief Commercial Officer, MyTomorrows

More than 90% of ALS therapeutics fail in clinics due to lack of efficacy. How can we increase the number of clinical trials for ALS and make them better and faster? This session will focus on strategies to improve patient recruitment and retention, increase diversity of participants, establish more trial sites, enable biomarker-driven trials, and make the trial process more efficient.

10:30 – 10:45 a.m.

Break & Networking

10:45 – 11:45 a.m.

Breakout Session Option 1 - Using Technology to Impact Living with ALS

John Costello, M.A., CCC-SLP, Director, Jay S. Fishman ALS Augmentative Communication Program at Boston Children's Hospital
Chris McFarland, ATP, CAPS, Director, Livable Homes, Lowe's Companies, Inc. 

As ALS progresses, a diverse array of medical equipment and assistive technologies play a crucial role in making it easier for people living with the disease to communicate, move, breathe, and perform daily activities. During this session, health care professionals, caregivers, and individuals impacted by ALS will gain valuable knowledge and practical insights into how to promote safety, independence, and an improved quality of life using these devices.

Breakout Session Option 2 - Innovative and Next-Gen Research

Chris Gibbons, Ph.D., Senior Vice President at Smartbox Assistive Technology Ltd
Christine Vande Velde, Ph.D., Professor at the Université de Montréal and Scientific Director of the Robert Packard Center for ALS Research at Johns Hopkins
Ashkan Vaziri, Ph.D., Founder and CEO of BioSensics

Researchers are using novel approaches to understand ALS biology, develop therapeutic interventions, measure clinical endpoints, and develop better communication modalities. This session will explore innovative and "next generation" approaches to finding new treatments and cures and optimizing quality of life for people living with ALS.

11:45 – 12:30 p.m.

Plenary - The Future of AI and ALS

Brenton W. Hill, JD, M.H.A, Regulatory Strategy and Compliance Manager at Mayo Clinic Platform    

AI has impacted every industry, and health care is no exception. From utilizing AI for early detection and diagnosis of cancer to enabling clinicians to deliver more empathetic care, there are endless possibilities for how AI can affect the future of health care. This session will explore the current state of AI and how it can affect ALS diagnosis and treatment in the future.

12:30 – 2:00 p.m.

Lunch & Exhibit Hall Open

2:00 – 3:00 p.m.

Breakout Session Option 1 - The Power of Caregiving

Allison Bulat, Strategic Advisor - Community Engagement, Northeast ALS Consortium (NEALS)
Claire MacAdam, 
PT, NCS, Physical Therapist, Sean M. Healey and AMG Center for ALS, Massachusetts General Hospital
Jennifer Myhre, MSSW, LICSW, Care Services Manager, the ALS Association

Caregivers directly impact patient outcomes. How can we assess caregiver skills and wellbeing, and equip them with the tools and resources they need to be successful? This session will explore how to best empower and engage caregivers through trainings, clinician support, and connection to crucial resources and programs.

Breakout Session Option 2 - The Future of Assistive Technology

Leigh Hochberg, M.D., Ph.D., Director, Center for Neurotechnology and Neurorecovery at Massachusets General Hospital
James Schorey, Chief Technology Officer of Control Bionics Inc.
Dexter Ang, Chairman and Co-Founder at Pison

Corporations and academic institutions are finding new ways to leverage recent technological advances to empower people with ALS to live their lives to the fullest. In this session we’ll explore the future of assistive technology and discuss how to ensure people living with ALS can access these devices.

3:00 – 3:15 p.m.

Break & Networking

3:15 – 4:00 p.m.

The Power of Partnership: A Community Conversation

Andrea Goodman, CEO, I AM ALS
Jennifer Thompson, Executive Director, Hope Loves Company
Laura Freveletti, CEO, Les Turner Foundation
Jennifer Hjelle, Chief Community Engagement Officer, ALS Association

What is possible when we come together to serve the ALS community? Join the leading ALS organizations for a deep dive into the critical needs of our community and the how we can collaborate effectively to address them. We'll explore real-world examples of successful partnerships between ALS organizations that have made a tangible difference in the lives of those impacted by the disease. From improving access to care, to advancing research and innovation, discover how the power of partnership is shaping a brighter future for the ALS community.

4:00 – 6:30 p.m.

Exhibit Hall Open
Sponsored by The Barnett Charitable Foundation

Exhibit Hall experience & Poster Session

Wednesday, July 17

9:00 – 9:30 a.m.

Opening Remarks 

Calaneet Balas, President & CEO of the ALS Association

9:30 – 10:15 a.m.

Plenary - Affordable Access to Genetic Therapies: A Community Conversation
Sponsored by Biogen

Jean Swidler, Executive Director of End the Legacy
Shelby Kinsey, Advocate and Person Living with ALS
Stacey Kinsey, Advocate and Caregiver
Melanie Lendnal, Esq., Senior Vice President, Policy & Advocacy, ALS Association
Kara Nett Hinkley, MPP, Vice President, State Policy, ALS Association

People with ALS and their families need access to genetic testing, but several barriers stand in their way, including cost and potential discrimination by insurance companies based on the results. This session will focus on what we know about potential treatments in the research pipeline that could prevent symptomatic ALS and what can be done to remove current barriers to genetic testing and counseling.

10:15 – 10:30 a.m.

Break & Networking

10:30 – 11:30 a.m.

Breakout Session Option 1 - Identifying and Supporting Underserved Communities

Suma Babu, M.D., M.P.H., MBBS, Assistant Professor of Neurology at Harvard Medical School 
Chelsey Carter, Ph.D., M.P.H., Assistant Professor of Public Health at Yale School of Public Health
Kelly G. Gwathmey, M.D.,
Associate Professor of Neurology, Virginia Commonwealth University

Health disparities in underserved communities present serious challenges for those living with ALS. Join us for an insightful session that delves into the critical issues surrounding ALS care in these communities. This session also will explore innovative strategies to identify and connect with these often-overlooked populations, emphasizing community outreach and strategic partnerships to improve overall quality of care.

Breakout Session Option 2 - The Road to Preventing Familial ALS

Michael Benatar, MBChB, M.S., DPhil, Executive Director of The ALS Center at the University of Miami, ALS Association Certified Treatment Center of Excellence
Elizabeth Harrington, M.S., Certified Genetic Counselor, Columbia University Neurological Institute
C. Frank Bennett, Ph.D, Executive Vice President and Chief Scientific Officer, Ionis Pharmaceuticals

Not everyone who carries an ALS-linked gene will develop the disease. Some will do so early in life, some late, and others not at all. What can we do to delay or even prevent ALS onset? This session will explore current science, prevention trials in gene carriers, and the steps we need to take to accelerate this work.

11:30 – 11:45 a.m.

Break & Networking

11:45 a.m. – 12:45 p.m.

Next Steps in Making ALS a Livable Disease: A Strategic Agenda for Public, Private, and Non-Profit Sectors
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) will publicly unveil its recommendations on how to make ALS a livable disease within a decade. During this session, NAS will also 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.

12:45 – 1:00 p.m.

Closing Remarks
Thanks for coming! See you next year!

1:00 p.m.

Lunch
Takeaway lunch and goodbye

*Please note that programming is subject to change. 

Register 

Meals 

Lunch will be provided each day. Dinner is provided as part of the Heroes Awards Dinner on Monday. Breakfasts each day and dinner on Sunday and Tuesday are not included.

Print Friendly and PDF