GOALS: An ALS United Podcast

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 missi...

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 fos...

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 empow...

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...

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 laun...

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...

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...

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...

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 t...

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 res...

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 nat...

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 fosteri...

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 thro...

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...

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 collabo...

RJ Adler with Wheelpad joins the ALS United Mid-Atlantic GOALS Podcast to discuss accessible living solutions for people with ALS. In this episode, Alisa and RJ discuss how new technologies can help people by offering dignity and independence. Learn more about our programs and mission at www.alsmidatlantic.org  

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 advocac...

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 uni...

Regina Shuster joins the ALS United Mid-Atlantic GOALS Podcast to discuss her family's history with ALS and her work at events such as the ALS United Walk. 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 and support to individuals and families affec...

Daniel Kelly joins Alisa Brownlee to discuss the important topic of Swallowing and ALS to address concerns, safety, and best practices. Daniel Kelly, MA, CCC-SLP, AT, is a speech-language pathologist and assistive technologist at the Jefferson Weinberg ALS Center in Philadelphia. With nearly two decades of experience in medical speech pathology, he’s focused on swallowing assessment, communication...

Zachary Simmons, MD and Kathleen Twomey, MD join the ALS United Mid-Atlantic GOALS Podcast to share their work at Penn State Health Hershey Medical Center and their new innovations around respiratory care and ALS. Dr. Simmons has led the ALS Treatment Center at Penn State Health Hershey Medical Center for 30 years and Dr. Twomey is adding her expertise as a pulmonologist for ALS patients. O ur mis...

Mark VandeBraak, PhD, FT, MT-BC joins the ALS United Mid-Atlantic GOALS Podcast to discuss issues about processing grief for those impacted by ALS. Dr. Mark talks about the various forms of grief, expressing compassion and empathy, opening up about our concerns, and what help is available for everyone. Our mission is to unite and empower the ALS community through a collaborative approach to foster...

Tim Kurkjian and his son Jeff Kurkjian are hosts of the baseball podcast "Is This a Great Game or What?" They also share a strong support for the ALS cause after their family's loss of Tim's brother Matt to ALS. Tim is the proud recipient of the 2022 BBWAA Career Excellence Award for his work as a baseball writer and journalist. In this episode of the ALS United Mid-Atlantic GOALS Podcast, Tim and...

In this podcast episode, Alisa Brownlee and Amanda Cuth discuss the challenges and strategies related to speech therapy for individuals with ALS. They explore the impact of ALS on communication, the importance of voice preservation techniques such as voice banking and cloning, and the role of technology in enhancing communication. The conversation also covers compensatory strategies for speech the...

Gale Ferranto and Buona Foods are uniting to match your donations for #GivingTuesday to ALS United Mid-Atlantic. In this GOALS Podcast, Gale discusses her mother's battle with ALS and her support for ALS care and research. 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 providi...