Épisodes

  • GOALS Podcast 21 Raziel Green on Living with familial ALS, clinical trials, and Qalsody
    Jul 8 2025

    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 providing comprehensive care and support to individuals and families affected by ALS. ALS United Mid-Atlantic serves people with ALS in Pennsylvania, New Jersey, and Delaware.

    To learn more about our programs and research and how to support our initiatives, visit www.alsmidatlantic.org

    #ALS #ALSResearch #Research #Trending #LivingwithALS

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    29 min
  • GOALS Podcast 20: Placing Stones and Honoring the Legacy of Loved Ones with ALS
    Jul 1 2025

    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 code STRENGTH25 in the coupon field at checkout. To help you get started, we’re also offering complimentary individual and group training sessions. Just click the Contact Us button on our website to schedule a time that works best for you.

    Thank you again for the opportunity to be part of your story. We look forward to building something meaningful together.

    Warm regards, The Placing Stones Team

    The mission of ALS United Mid-Atlantic 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 affected by ALS. ALS United Mid-Atlantic serves people with ALS in Pennsylvania, New Jersey, and Delaware.

    To learn more about our programs and research and how to support our initiatives, visit www.alsmidatlantic.org

    #ALS #ALSUnited #Legacy #Family

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    31 min
  • GOALS Podcast: Jayne Etskovitz discusses ALS and Social Work
    Jun 24 2025

    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 bold research initiatives, advancing national and state advocacy, and providing comprehensive care and support to individuals and families affected by ALS.

    ALS United Mid-Atlantic serves people with ALS in Pennsylvania, New Jersey, and Delaware. To learn more about our programs and research and how to support our initiatives, visit www.alsmidatlantic.org

    #ALS #ALSUnited #ALSAwareness #SocialWork #Caregiving

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    31 min
  • GOALS Podcast 18 with Doug Yocum - Review of 2025 Philadelphia Phillies ALS Awareness Night
    Jun 17 2025

    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 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 affected by ALS. ALS United Mid-Atlantic serves people with ALS in Pennsylvania, New Jersey, and Delaware.

    To learn more about our programs and research and how to support our initiatives, visit www.alsmidatlantic.org

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    32 min
  • ALS United Mid-Atlantic GOALS Podcast 17 with Sheri and David from ALS Network
    Jun 10 2025

    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 approach to fostering bold research initiatives, advancing national and state advocacy, and providing comprehensive care and support to individuals and families affected by ALS. ALS United Mid-Atlantic serves people with ALS in Pennsylvania, New Jersey, and Delaware.

    To learn more about our programs and research and how to support our initiatives, visit www.alsmidatlantic.org

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    38 min
  • GOALS Podcast 16 with Dr. James Grogan and Dr. Andrew Geronimo on ALS and BCI
    Jun 3 2025

    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 collaborative approach to fostering bold research initiatives, advancing national and state advocacy, and providing comprehensive care and support to individuals and families affected by ALS. ALS United Mid-Atlantic serves people with ALS in Pennsylvania, New Jersey, and Delaware.

    To learn more about our programs and research and how to support our initiatives, visit www.alsmidatlantic.org

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    42 min
  • GOALS Podcast 15 with Paul Melmeyer of MDA on ACT for ALS and Medicaid
    May 27 2025

    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 mission of ALS United Mid-Atlantic 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 affected by ALS.

    ALS United Mid-Atlantic serves people with ALS in Pennsylvania, New Jersey, and Delaware. To learn more about our programs and research and how to support our initiatives, visit www.alsmidatlantic.org

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    45 min
  • GOALS Podcast 14 with Laura Ness of Hearts for Home Care
    May 20 2025

    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 www.alsmidatlantic.org

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    35 min