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National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Health Sciences Policy; Board on Health Care Services; Committee on Amyotrophic Lateral Sclerosis: Accelerating Treatments and Improving Quality of Life; Alper J, English RA, Leshner AI, editors. Living with ALS. Washington (DC): National Academies Press (US); 2024 Sep 10.
First Committee Meeting
Public Session Agenda
Thursday, March 23, 2024
1:30 p.m.–3:00 p.m. (ET)
Virtual
OPEN SESSION
| 1:30 p.m. | Welcome and Introductions |
| ALAN I. LESHNER, Committee Chair | |
| Chief Executive Officer, Emeritus | |
| American Association for the Advancement of Science | |
| 1:35 p.m. | Presentation of the Charge to the Committee |
| WALTER KOROSHETZ | |
| Director, National Institute of Neurological Disorders and | |
| Stroke, National Institutes of Health | |
| 2:00 p.m. | Discussion with Committee |
| 2:45 p.m. | Public Comments |
| 3:00 p.m. | Adjourn Open Session |
Second Committee Meeting
Public Session Agenda
Thursday, May 18, 2023
9:30 a.m.–12:00 p.m. (ET)
Hybrid
OPEN SESSION
| 9:30 a.m. | Welcome and Opening Remarks |
| ALAN I. LESHNER, Committee Chair | |
| Chief Executive Officer, Emeritus | |
| American Association for the Advancement of Science |
Box
SESSION 1 WHAT TOOLS DO ALS NONPROFITS NEED TO BE MORE EFFECTIVE AND IMPACTFUL?
| 9:40 a.m. |
Panel Session Remarks Virtual Participants
|
| 10:20 a.m. | Break |
| 10:30 a.m. |
Panel Session Remarks In-Person Participants
|
| 11:15 a.m. | Discussion with Committee |
| 12:00 p.m. | Adjourn Open Session |
Public Workshop
Public Session Agenda
Thursday, August 10, 2023
12:00 p.m.–3:10 p.m. (ET)
Virtual
OPEN SESSION
| 12:00 p.m. | Welcome and Opening Remarks |
| JOSHUA M. SHARFSTEIN, Committee Member | |
| Vice Dean for Public Health Practice and Community | |
| Engagement, Johns Hopkins Bloomberg School of Public Health |
Box
SESSION 1 PANEL ON INSURANCE COVERAGE FOR ALS CARE
| 12:05 p.m. | Medicare and Medicaid |
| TERRI POSTMA | |
| Senior Medical Officer, Centers for Medicare & Medicaid Services | |
| Home Health Care for Veterans Living with ALS | |
| RENEE GOLDEN | |
| Regional Director, Military & Federal Homecare, Maxim Healthcare Services | |
| Private Insurance | |
| LISA M. LATTS | |
| Senior Medical Director, Value Based Care, Optum Health Medical Office | |
| 12:35 p.m. | Discussion with Committee |
| 1:00 p.m. | Break |
Box
SESSION 2 PANEL ON NAVIGATING ALS CARE AND PAYMENT
| 1:10 p.m. | Lived Experience Perspective |
| BRUCE ROSENBLUM | |
| Vice President of Content and Workflow Solutions, Wiley Person Living with ALS | |
| Navigating ALS Care and Payment with People Living with ALS | |
| COLLEEN HOARTY | |
| Medical Social Worker | |
| University of Nebraska Medical Center | |
| MELANIE LENDNAL | |
| Senior Vice President, Policy and Advocacy, ALS Association | |
| JOANNE LYNN | |
| Eldercare Consultant | |
| 1:50 p.m. | Discussion with Committee |
Box
SESSION 3 PERSPECTIVES ON NEEDS AND OPPORTUNITIES IN THE ALS MULTIDISCIPLINARY CARE MODEL
| 2:05 p.m. | ALS Multidisciplinary Care Model—ALS Association Certification |
| LORI BANKER-HORNER | |
| Senior Director, Clinical Programs, ALS Association | |
| ALS Multidisciplinary Care Model—MDA Certification | |
| NORA CAPOCCI | |
| Vice President, Healthcare Services | |
| Chief Privacy Officer, Muscular Dystrophy Association | |
| 2:25 p.m. | Discussion with Committee |
Box
SESSION 4 ALS Multidisciplinary Care-Provider Perspectives
| 2:05 p.m. | Provider Perspectives |
| TERRY HEIMAN-PATTERSON, | |
| Director, MDA/ALS Center of Hope, | |
| Temple University | |
| JOHN HANSEN-FLASCHEN, | |
| Founding Medical Director, Paul Harron Lung Center | |
| University of Pennsylvania | |
| 2:55 p.m. | Discussion with Committee |
| 3:10 p.m. | Adjourn Open Session |
Public Workshop
Public Session Agenda
Wednesday, August 23, 2023
12:00 p.m.–3:00 p.m. (ET)
Virtual
OPEN SESSION
| 9:30 a.m. | Welcome and Opening Remarks |
| ALAN I. LESHNER, Committee Chair | |
| Chief Executive Officer, Emeritus, American Association for the Advancement of Science |
Box
SESSION 1 UNDERSTANDING LIVING WITH ALS
| Sarah Lunsford, Moderator | |
| 12:15 p.m. |
Panel Session Remarks
|
Box
SESSION 2 THE COST OF CARE
| Sarah Lunsford, Moderator | |
| 1:00 p.m. |
Panel Session Remarks
|
| 1:45 p.m. | Break |
Box
SESSION 3 EXPLORING THE CAREGIVER EXPERIENCE
| Sarah Lunsford, Moderator | |
| 2:00 p.m. |
Panel Session Remarks
|
| 2:45 p.m. | Closing Remarks |
| 3:00 p.m. | Adjourn Open Session |
Public Workshop
Public Session Agenda
Friday, September 1, 2023
12:00 p.m.–3:45 p.m. (ET)
Virtual
OPEN SESSION
| 12:00 p.m. | Welcome and Opening Remarks |
| ALAN I. LESHNER, Committee Chair | |
| Chief Executive Officer, Emeritus, American Association for the Advancement of Science |
Box
SESSION 1 MEDICARE COVERAGE CHALLENGES IN ALS
| Sarah Lunsford, Moderator | |
| 12:05 p.m. | KATHLEEN HOLT |
| Associate Director/Attorney, Center for Medicare Advocacy |
Box
SESSION 2 ALS EPIDEMIOLOGY AND RESEARCH
| 12:30 p.m. | PAUL MEHTA |
| Principal Investigator, National ALS Registry | |
| SARAH FONTAINE | |
| Program Manager, Congressionally Directed Medical Research Programs, ALS Research Program, U.S. Department of Defense | |
| 1:05 p.m. | Break |
Box
SESSION 3 ALS DRUG DEVELOPMENT
| Academic Research and the ALS Drug Development Pipeline | |
| 1:50 p.m. | JUSTIN ICHIDA |
| Professor of Stem Cell Biology and Regenerative Medicine, University of Southern California | |
| FDA and NIH Public–Private Partnership—Critical Path for Rare Neurodegenerative Disease (CP-RND) | |
| COLLIN HOVINGA | |
| Vice President, Rare and Orphan Disease Programs, Critical Path Institute | |
| ALS Therapy Development Institute (TDI) | |
| FERNANDO VIEIRA | |
| Chief Executive Officer and Chief Scientific Officer, ALS Therapy Development Institute | |
| Panel Session Remarks | |
|
Box
SESSION 4 DESIGNING CLINICAL TRIALS IN ALS
| 2:35 p.m. | JAMES BERRY |
| Director, Neurological Clinical Research Institute, Massachusetts General Hospital | |
| BOB HEBRON | |
| Chair, Clinical Trials Team, I AM ALS | |
| 3:05 p.m. | Break |
Box
SESSION 5 PANEL ON LESSONS LEARNED FROM OTHER DISEASE AREAS
| Lessons Learned—The Evolution of Cystic Fibrosis Care | |
| 3:10 p.m. | ALBERT FARO |
| Vice President, Clinical Affairs, Cystic Fibrosis Foundation | |
| Patient-Reported Outcomes and Preferences | |
| NORAH CROSSNOHERE | |
| Assistant Professor, General Internal Medicine, Ohio State University College of Medicine | |
| Integrating Research and Clinical Care—Pediatric Oncology | |
| WILLIAM WOODS | |
| Professor Emeritus, Department of Pediatrics, Emory University School of Medicine | |
| 3:45 p.m. | Closing Remarks |
| 3:45 p.m. | Adjourn Open Session |
- Public Session Agendas - Living with ALSPublic Session Agendas - Living with ALS
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