Watch the 2025 Help & Hope Symposium

ALS and Research​​

Alissa Romano, DO | Lehigh Valley Health Network

This presentation described clinical research and the different ways patients with ALS can get involved with research. Dr. Romano also briefly discussed research at the Lehigh Valley Health Network.

ALS Multidisciplinary Clinic:

Improving a Successful Model of Care​

Zachary Simmons, MD​ | ALS Clinic and Research Center, Penn State Health Milton S. Hershey Medical Center

​The ALS Multidisciplinary Clinic has been the model for ALS care for more than 40 years. It prolongs survival and results in better overall quality of life, as perceived by people with ALS, than traditional single-physician care. However, even successful models can be improved upon.

Bridging Disease Mechanisms and Therapeutic Discovery: Identifying Candidate Target Molecules for Genetic and Sporadic ALS​

Brigid Jensen, PhD | Thomas Jefferson University, Department of Neuroscience, Jefferson Weinberg ALS Center

Brigid’s laboratory uses mechanistic understanding from wet lab research modeling forms of ALS to drive potential therapeutics, as well as patient-derived models to identify biomarkers and key targets for future investigation.

FTD and ALS; When Two Paths Meet

Kim Jenny, MS, LCGC | The Association for Frontotemporal Degeneration

Kim reviewed the basic principles of genetics and the intersection between FTD and ALS. Previously, ALS was thought to be purely a movement disorder, while FTD was considered purely a cognitive or behavioral form of dementia. The shared genetics between FTD and ALS means families may experience both FTD and ALS.

Home Accessibility Options for People with ALS / Accessibility and Affordability

Alisa Brownlee, ATP, CLIPP, CAPS, WPS, CEAC/Mastery | ALS United Mid-Atlantic

Kimberly Krauter | HDC MidAtlantic

Most homes are not designed or constructed to accommodate the needs of disabled people in terms of accessibility, safety, independence, and location. Adapting a living environment to meet the changing needs of ALS may become a necessity as these diseases progress.

Social Worker Role Within the ALS Community

Anne Cooney, MSW, LSW, and Melissa Coll, MSW, LSW | ALS United Mid-Atlantic

​Anne and Melissa’s program educated attendees about the role of the ALS social worker. The two shared more details about the impact the social worker has on patients and families within the ALS Community. At the end of the program, they discussed various services and programs offered by ALS United Mid-Atlantic to support people living with ALS and their families.

Updates From the Lab, and How ALS

Families Are Engaging with ALS TDI

Carol Hamilton | ALS Therapy Development Institute

​The ALS Therapy Development Institute is the world’s largest independent ALS research institute, focused solely on ending ALS. During Carol’s presentation, she discussed two drugs that have come through ALS TDI are now in clinical development, and two current programs in the lab are advancing toward IND-enabling (the work required by the FDA before a drug can be tested in humans).