GOALS: An ALS United Podcast

Maria Malfi lost her mother to ALS. Through her experience and her personal research, Maria has focused her attention on issues of stress and mental health and how they impact an ALS diagnosis and affect caregivers as well. In this GOALS Podcast, Maria talks about her family's experience with ALS, touring the research lab at Penn State Health Hershey Medical Center, and how to have better conversations about mental health.

Our miss...

Taryn Norley, President and CEO of ALS Arizona, joins the ALS United Mid-Atlantic GOALS Podcast to discuss the work of serving the ALS community in Arizona and how it compares to other ALS United partners. Topics include delivering on care services, partners with clinics and researchers, serving rural communities, and inspiring events. To learn more about ALS Arizona, visit www.alsaz.org

Our mission is to unite and empower the ALS ...

Brianna Lisi, MS, is a PhD candidate doing her work at the Jefferson Weinberg ALS Center in Philadelphia. In this Podcast, Brianna talks about what inspired her to go into ALS research, what a typical day is like for a researcher, motor neurons, astrocytes, and what tests can prove useful for ALS science.

Our mission is to unite and empower the ALS community through a collaborative approach to fostering bold research initiatives, a...

Josi Shimkus, MA, CCC-SLP, Hackensack Meridian Health Jersey Shore University Medical Center, joins the ALS United Mid-Atlantic GOALS Podcast to discuss her expertise and work assisting people with ALS with communication therapy and technology. Topics include swallowing issues, tracking speaking strength, coordinating with the clinic team, and the ALS United Walk.

Our mission is to unite and empower the ALS community through a coll...

Cassy Adams from  @ALSNorthwest  joins the ALS United Mid-Atlantic GOALS Podcast to discuss ALS care, research, and advocacy and how our partner organizations can collaborate to best serve the ALS community. Learn more about ALS Northwest at www.alsnorthwest.org

Our mission is to unite and empower the ALS community through a collaborative approach to fostering bold research initiatives, advancing national and state advoc...

Jeff Oppenheimer understands the needs and challenges of ALS. His wife Shelbie was diagnosed with ALS in 1996 and together Jeff and Shelbie raised awareness and successfully advocated for millions of dollars for ALS research.

Since then, Jeff has served on the board of ALS United Mid-Atlantic and he has worked to improve the lives of people with ALS and their caregivers. Recently, Jeff helped launch ALS.Community. This new resource...

Nadia Sethi joins the ALS United Mid-Atlantic GOALS Podcast to discuss her experience caring for a loved one with ALS and how everyone can be empowered through ALS awareness, education, and research. In this episode, Nadia discusses some of the challenges of navigating hope and caution, as well as how everyone can participate in scientific advancement. Nadia has been involved with ALS TDI and I AM ALS and she is now working with No...

Frederick "Eric" Arnold, PhD, joins the ALS United Mid-Atlantic GOALS Podcast to discuss major advances in ALS research, genetics, and the importance of understanding TDP-43. Dr. Arnold talks about his education and inspiration through Haverford College and Thomas Jefferson University and his ongoing research work at Washington University. On April 9th, 2026, Dr. Arnold spoke about these topics at the ALS United Mid-Atlantic Help a...

Jean Swidler, Executive Director with End the Legacy joins the ALS United Mid-Atlantic GOALS Podcast to talk about advocating for families with genetic ALS, advances in research, and addressing the needs of those at risk of developing ALS due to family history. Learn about End the Legacy at www.endthelegacy.org

Our mission is to unite and empower the ALS community through a collaborative approach to fostering bold research initiat...

Carol Hamilton joins the ALS United Mid-Atlantic GOALS Podcast to talk about the latest progress in ALS research and her work at ALS TDI. In this podcast video, Carol talks about the ARC study, making ALS research approachable for anyone, collaboration between ALS organizations and scientists, how Artemis II provides hope for science, and why 2026 is a big year for ALS research. Learn more about the work at ALS TDI and how you can ...

Alisa Brownlee recently marked 30 years of supporting the ALS community at ALS United Mid-Atlantic. In this GOALS Podcast, she highlights the many changes in assistive technology over the years and how this technology has grown and evolved to meet the communication needs of people with ALS.

Our mission is to unite and empower the ALS community through a collaborative approach to fostering bold research initiatives, advancing nation...

Pennsylvania State Representative Kyle Mullins joins the ALS United Mid-Atlantic GOALS Podcast to discuss his family's personal ALS story, advocacy wins for ALS care and research, connecting with other ALS families, and the power of using your personal story.

Our mission is to unite and empower the ALS community through a collaborative approach to fostering bold research initiatives, advancing national and state advocacy, and provi...

Jerry Dawson, President and CEO of ALS United, joins the ALS United Mid-Atlantic GOALS Podcast to discuss collaboration within the ALS community, the growth and mission of ALS United, and the hope and promise in new research and technologies. Learn more about ALS United nationally at www.alsunited.org

Our mission is to unite and empower the ALS community through a collaborative approach to fostering bold research initiatives, adva...

Yentli Soto Albrecht, PhD,  @searchforaselfcure  joins the ALS United Mid-Atlantic GOALS Podcast to talk about her family's genetic history with ALS and her personal mission to end the disease through research. In this episode, Yentli talks about what motivates her, what she's learned, and how research can bring hope and motivation to all.

Our mission is to unite and empower the ALS community through a collaborative appro...

Alair Altiero, PhD, LPC, provides mental health support for people with ALS and caregivers as part of the multidisciplinary team at Penn State Health Hershey Medical Center. In this GOALS Podcast, Alair discusses the man aspects of mental health, when and how she offers her guidance, handling burnout, and how stress impacts caregiving.

Our mission is to unite and empower the ALS community through a collaborative approach to fosteri...

Piera Pasinelli, PhD, Director, Weinberg ALS Center, and Gemma Krautzel, B.S., Clinical Research Coordinator, join the ALS United Mid-Atlantic GOALS Podcast to discuss the BioBank at the Jefferson Weinberg ALS Center in Philadelphia. In this podcast, they also talk about the process of post-mortem tissue donation, developing trust with ALS patients and families, multidisciplinary care, and collaboration with the ALS United Mid-Atla...

Director of Care Services Steve Spaulding, MA, joins the ALS United Mid-Atlantic GOALS Podcast to talk about the structure of our Care Services Department, the recent International ALS/MND Symposium, patient and family events, and more.

Our mission is to unite and empower the ALS community through a collaborative approach to fostering bold research initiatives, advancing national and state advocacy, and providing comprehensive care...

Bryan Rosica is a teacher and father living with ALS. He now uses assistive technology to speak. In this ALS United Mid-Atlantic GOALS Podcast, Bryan and his wife Lisa discuss their ALS journey from diagnosis to today, including support from ALS United Mid-Atlantic care professionals, speaking at events like the Annual Celebration, and connecting with students to explain ALS.

Our mission is to unite and empower the ALS community th...