GOALS: An ALS United Podcast
Discussing issues important to the ALS community with views from people living with ALS and those supporting the ALS cause. Topics range from research to caregiving to advocacy and fundraising. Support the mission of ALS United Mid-Atlantic at www.alsmidatlantic.org
Episodes
ALS United Mid-Atlantic collaborate with a growing list of partners to address the needs of the ALS community and to support wider issues that include research funding and accessibility. In this GOALS Podcast, Lauren Holder of Help 4 HD speaks about her experience living with Huntington's Disease and how we can accomplish more by partnering for our shared goals. View her podcast at @help4hdtv
Our mission is to unite and empower t...
Raziel Green is living with a genetic form of ALS due to the SOD1 mutation. In this ALS United Mid-Atlantic GOALS Podcast, Raziel talks about her diagnosis, participation in a clinical trial, and her life since starting use of Toferson, otherwise known as Qalsody.
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 ...
Placing Stones joins the ALS United Mid-Atlantic GOALS Podcast to discuss a special offer to preserve the legacies of loved ones, including those with ALS.
To the ALS United Mid-Atlantic Community, We’re honored to support your journey in preserving meaningful memories. As a special offer, we’d like to provide your first year free on Placing Stones—our digital legacy platform. https://placingstonesstudio.com/
Simply enter the cod...
Jayne Etskovitz joins the ALS United Mid-Atlantic GOALS Podcast to discuss her work supporting ALS patients and caregivers. Jayne shares examples of how resource groups benefit all aspects of ALS care and she talks about her favorite ALS United events, helping people solve problems, and building a stronger community for ALS families.
Our mission is to unite and empower the ALS community through a collaborative approach to fostering...
Doug Yocum joins the ALS United Mid-Atlantic GOALS Podcast to discuss living with ALS, his initial ALS symptoms, and a review of his experience with the Philadelphia Phillies for ALS Awareness Night and Lou Gehrig Day. In this episode, Doug talks about home care, research, care from the team at the Jefferson Weinberg ALS Center, expanded access for clinical trials, and support for ACT for ALS.
Our mission is to unite and empower th...
In this latest ALS United Mid-Atlantic GOALS Podcast, Sheri Strahl, MPH, MBA and David Buseck share their experience and insight into ALS research through their work at ALS Network.
Topics include filling the gaps of private industry and empowering ALS patients through research. Lean more about ALS Network @youralsnetwork at https://alsnetwork.org
Our mission is to unite and empower the ALS community through a collaborative ap...
Drs. James Grogan and Andrew Geronimo of @PennStateHealth join the ALS United Mid-Atlantic GOALS Podcast to discuss advances in Brain Computer Interface and other communication tools and how they benefit people with ALS. In this podcast, they discuss the nature of communication, how BCI works, measuring BCI success, and lessons from technology such as video games.
Our mission is to unite and empower the ALS community through a co...
Paul Melmeyer from @MDA joins the ALS United Mid-Atlantic GOALS Podcast to discuss collaborating on ALS Advocacy, recent advocacy successes like the ALS Disability Insurance Access Act, reauthorization of ACT for ALS, and protecting Medicaid.
Learn more about MDA's work on Medicaid at: https://www.mda.org/press-releases/proposed-medicaid-and-health-coverage-cuts-raise-substantial-concern-for-the-neuromuscular-community
The mis...
Laura Ness with Hearts for Home Care is the featured guest on the latest ALS United Mid-Atlantic GOALS Podcast. Topics include advocating for home care access, how people with ALS benefit from home care, and how home care is a smart choice for state budgets.
Learn more about Hearts for Home Care at www.heartsforhomecare.com
Learn more about ALS, our programs and services, and how to support the mission of ALS United Mid-Atlantic at...
Daniela Zarnescu, PhD, is the Associate Dean for Graduate Education and Postdoctoral Training at Penn State College of Medicine. She joins the ALS United Mid-Atlantic GOALS Podcast to discuss her work in ALS research, how people can enroll in ongoing studies, the advances in science during her career, and what gives her hope for the ALS cause.
Learn more about Dr. Zarnescu and her team at: https://sites.psu.edu/zarnesculab/meet-th...
ALS United Mid-Atlantic nurse Maureen Reid, RN, BSN, joins the GOALS Podcast to discuss her personal history with ALS, connecting with ALS patients and families, ALS advocacy, and the strong reputation and research work at Penn State Health Hershey Medical Center.
Learn more about ALS, our programs and services, and how to support our mission at www.alsmidatlantic.org
Janie Dalrymple joins The ALS United Mid-Atlantic GOALS Podcast for an important topic on ALS and Mechanical Ventilation. In this episode, Janie highlights the questions to ask before making a decision on mechanical ventilation, costs considerations, additional care needs, and long-term planning.
To learn more about ALS United Mid-Atlantic and how to support our mission, visit www.alsmidatlantic.org
Josh Hunter has a form of ALS called Juvenile ALS. Over the past year, Josh has been active in ALS awareness, advocacy, and research. In this ALS United Mid-Atlantic GOALS Podcast, Josh talks about a special week in review and shares his experience with his daughter Phoenix at the AEW Dynasty show and the Help and Hope Symposium. Other topics include mental health, caregiving, and an upcoming event on June 14th with Ric Flair at Ha...
Diane Reibel, PhD, joins the ALS United Mid-Atlantic GOALS Podcast to discuss her work on ALS and Mindfulness. Topics include the sciences behind mindfulness, reducing stress, and programs to benefit people with ALS and their caregivers. To learn more about ALS and our programs, visit www.alsmidatlantic.org
Diane Reibel, PhD, is the director of the Myrna Brind Center for Mindfulness. Learn more about her work at https://www.jeff...
Dana Little joins the ALS United Mid-Atlantic GOALS Podcast to discuss her experience as a caregiver for her husband during his battle with ALS, how friends and family provide comfort and support, the importance of advocacy, and working to increase funding for research. Learn more about ALS and our services by joining our ALS mission at www.alsmidatlantic.org
#ALS #caregiving #podcast #alsunited #advocacy #alsadvocacy
Carol Hamilton joins the ALS United Mid-Atlantic GOALS Podcast to discuss the ALS research efforts from The ALS Therapy Development Institute (ALS TDI). In this episode, Carol talks about increased scientific collaboration, the challenges of complex trials, and empowering people with ALS through participating in ALS research.
Learn more about ALS and the work of ALS United Mid-Atlantic at www.alsmidatlantic.org
ALS United Mid-Atlantic social workers Melissa Coll and Anne Cooney join the GOALS Podcast to discuss their work assisting ALS patients and families, the value of a multidisciplinary treatment center, navigating insurance, and advocating for the ALS cause.
Join Melissa and Anne at the 2025 Help and Hope Symposium by registering at https://www.helpandhopealsmidatlantic.org/
Learn more about ALS, our services and research, and how ...
Jackie Cox discusses her mother's battle with ALS and the event at Haverford College to raise money for the ALS cause that takes place on April 4th, 2025. To learn more about ALS, upcoming events, and how to support ALS United Mid-Atlantic, visit www.alsmidatlantic.org
#ALS #ALSUnited #Haverford #podcast #Pennsylvania
https://secure.alsmidatlantic.org/site/TR/DIY/General?team_id=7001&pg=team&fr_id=1271
Alisa Brownlee, ATP, CLIPP, CAPS, WSP, CEAC/Mastery, joins the ALS United Mid-Atlantic GOALS Podcast to discuss accessibility options for people with ALS, home modifications, and the personal connection between care staff and those living with ALS.
On Thursday, April 10th, Alisa will be one of the presenters at the ALS United Mid-Atlantic Help and Hope Symposium in King of Prussia, PA.
Tim Abeska, Cristy Hardin, and Deb Winters join the ALS United Mid-Atlantic GOALS Podcast to discuss the Tim Lowery Series and building community for those living with ALS. We talk about empathy dinners, building connections, and hope through advocacy. Learn more about Tim Lowery at: https://www.iamals.org/stories/tim-lowrey/
Join the ALS United Mid-Atlantic mission at www.alsmidatlantic.org
#ALS #ALSUnited #IAMALS #ALSAdvocacy #...
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