HSCT Warriors

Zen Jen Stansbury Koenig
  • 4,6 (24)
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Illuminating the invisibilities of autoimmune disease. Designed to bring voice to HSCT journeys – highlight the snowflakes (individual experiences) and recognize our superpowers – because we are as unique in our HSCT journey as we are in our experience with autoimmune disease.

  1. Meet Anthony and learn about the various tools he embraced to battle MS (Ep. 108)

    30 МАР.

    Meet Anthony and learn about the various tools he embraced to battle MS (Ep. 108)

    Warrior: Anthony Ramirez AI: caregiver for son with MS HSCT: December 12, 2016 Superpower: resilience To what extent do you appreciate the journey? What version of yourself do you present to the world? After a concussion landed Anthony in the ER, his diagnosis of multiple sclerosis was not easy to understand, especially when the disease-modifying drugs did not work like other medications. As he dove into research to try to find more answers, he and his mom Cindi (see Episode 107) happened upon a brief mention of Dr. Burt’s research at Northwestern University and committed to learn everything possible about the latest treatments. Tune in to hear more of Anthony’s journey through HSCT and how he is faring now, nearly 9 years post-transplantand learn how her son is doing nearly nine years after undergoing HSCT. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to audio guru Jacob Kinch for engineering the audio to make this podcast possible. You can find us when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: Ataxia Center, Johns Hopkins

    1 ч. 15 мин.
  2. Connect with Cindi to learn how she continues to advocate for her son (Ep. 107)

    26 МАР.

    Connect with Cindi to learn how she continues to advocate for her son (Ep. 107)

    Warrior: Cindi Ramirez AI: caregiver for son with MS HSCT: December 12, 2016 Superpower: resilience How determined are you to find the best care? When her son suffered a concussion at a company picnic, a CT scan revealed a diagnosis of Multiple Sclerosis. Determined to get him the best care, Cindi sought out top-tier treatment at the Cleveland Clinic, but even with disease-modifying therapies, his symptoms continued to progress. After months of research, Cindi came across a webinar discussing stem cell research led by Dr. Burt at Northwestern University, and together they decided to pursue HSCT. Tune in to hear Cindi’s heartfelt journey as both a mother and caregiver, and learn how her son is doing nearly nine years after undergoing HSCT. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to audio guru Jacob Kinch for engineering the audio to make this podcast possible. You can find us when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

    59 мин.
  3. Meet Larry and learn what inspired him to make HSCT more accessible (Ep. 106)

    8 МАР.

    Meet Larry and learn what inspired him to make HSCT more accessible (Ep. 106)

    Warrior: Larry Powalisz AI: Primary Progressive Multiple Sclerosis HSCT: May 2022 Superpower: humbled by MS How dedicated are you to health and wellness? How committed are you to helping people halt autoimmune disease? After Larry’s left hand went numb and he was diagnosed with MS, the only option his neurologist offered was Ocrevus. His research led him to HSCT at Clinica Ruiz. Upon returning home, Larry was inspired to help others gain access to HSCT and he founded a nonprofit organization to help cover the costs, but soon learned that fundraising for HSCT was not enough. He then founded Adia Med, now a publicly traded company to offer HSCT and other treatments to people battling autoimmune diseases. Tune in to learn more about Larry’s journey with HSCT, how he is a guinea pig at Adia, and his dedication to making HSCT more accessible to individuals with autoimmune disease. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to audio guru Jacob Kinch for engineering the audio to make this podcast possible. You can find us when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: Adia Med outpatient HSCT clinic in Winter Park, Florida MS Heal the World nonprofit organization MS Hope and the Best Bet Diet for MS Brandon Bieber, neurologist Aaron Boster, neurologist Richard Burt, Everyday Miracles

    1 ч. 1 мин.
  4. Check-in with Ali at more than seven years post-HSCT as we launch our twelfth season (Ep. 105)

    3 МАР.

    Check-in with Ali at more than seven years post-HSCT as we launch our twelfth season (Ep. 105)

    Warrior: Ali Strong AI: Multiple Sclerosis HSCT: November 2017 Superpower: wellness When doctors aren’t able to answer your questions, who do you turn to? Are you someone who strives to find answers? Do you find the present in each day? The beginning of a new season offers the opportunity to check in with Ali and how she is faring, more than seven years post-HSCT. Tune in to learn how HSCT has shifted her symptoms and experience with MS, gain updates on Ali’s health and approach to wellness, and learn how she is focusing her energy these days. Be sure to visit HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, and connect with resources and the HSCT Warriors Inc nonprofit. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, and audio genius Jacob Kinch for sharing his superpowers to edit and produce the audio to make this podcast possible. Find us and subscribe to the HSCT Warriors Podcast on SoundCloud, iTunes, or wherever you find podcasts. It has been great to connect with Warriors worldwide and we would love to hear from you about how the podcast has helped your journey with autoimmune disease… take a moment to connect with us on instagram or share this episode with someone you know that would enjoy listening. In the meantime, we hope you’ll tune in for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.

    51 мин.
  5. Connect with Veena and learn how she embodied a positive mindset through HSCT (Ep. 104)

    24.07.2024

    Connect with Veena and learn how she embodied a positive mindset through HSCT (Ep. 104)

    Warrior: Veena Kinni AI: Multiple Sclerosis HSCT: Cleveland Clinic, 2021 Superpower: ability to know inner strength How fully do you embrace opportunities to enjoy life? How do you promote a positive mindset? As a trained physician, it was hard for Veena as she transitioned to being a patient after she was diagnosed with multiple sclerosis in December of 2011. She began on a disease-modifying therapy that she paused in order to get pregnant, though soon after delivering her daughter, her symptoms flared. Between 2014 and 2020, Veena’s condition continued to deteriorate until 2020 when she visited a neurologist at the Cleveland Clinic who suggested HSCT and embraced the opportunity with an ‘ignorance is bliss’ mindset. While she believes that it halted the progression of her disease, and shows no active lesions on MRI, the procedure and recovery have been challenging for Veena, which she attributes to being in the secondary progressive phase of disease. Tune in to learn more about Veena’s experience, her transition to JC+ during treatment with disease modifying therapy, and why she agrees that pursuing HSCT sooner in the course of the experience with autoimmune disease to avoid lasting damage. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to Jacob Kinch for engineering the audio to make this podcast possible. You can find us when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: Center for Regnerative Biotherapeutics Vinna Kinni, MD Multiple Sclerosis Defeater (blog)

    44 мин.
  6. Meet Janet and learn more about how she eliminated stress along her path to HSCT (Ep. 103)

    11.07.2024

    Meet Janet and learn more about how she eliminated stress along her path to HSCT (Ep. 103)

    Warrior: Janet Matthews AI: Multiple Sclerosis HSCT: Puebla, February/March 2022 Superpower: kindness To what extent are you able to eliminate stress from your life? Do you believe you can achieve whatever you put your mind to? To what extent are you aware of treatment options? Despite noticing some symptoms that interfered with walking and mobility, Janet postponed seeing doctors until after she retired from being a police officer. While Janet did not find her career to be stressful, she did experience intense stress in her relationships and personal life. Once Janet came down with bouts of hives caused by intense, long-sustained stress, she began taking steps to reduce and eliminate stress from her life. Over time, Janet experienced other stressors and symptoms (like foot drop and optic neuritis) that she was able to explain away at the time they occurred, but upon reflection, realized they were all related to her eventual diagnosis of multiple sclerosis in March of 2020. Tune in to learn more about how Janet explored options for HSCT in the US and Mexico, prepared her body physically for HSCT, developed strong feelings about accessibility to HSCT, found motivation to write a book about her experience and help others, and ended up having a complete reversal of symptoms. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to Jacob Kinch for engineering the audio to make this podcast possible. You can find us when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

    1 ч. 49 мин.
  7. Connect with Christian to learn more about his mindful approach to HSCT in Calgary (Ep. 102)

    20.03.2024

    Connect with Christian to learn more about his mindful approach to HSCT in Calgary (Ep. 102)

    Warrior: Christian AI: Multiple Sclerosis HSCT: 11/3/23 at the Tom Baker Cancer Center in Calgary Superpower: body awareness What is your capacity for listening to your body? How well do you fare through complications? How comfortable are you with looking inward? After the numbness and tingling in his legs restricted his capacity to walk in the course of just a few weeks, Christian was quickly diagnosed after finding the right doctor who knew what his symptoms were indicating. After cycling through a variety of disease-modifying therapies over the course of seven years, Christian continued relapsing. After the humbling and terrifying experience of being wheelchair-bound for a few months in December of 2022, Christian switched DMTs again and after it didn’t stop new lesions, he was eventually referred for HSCT in Calgary in June of 2023. Tune in to learn more about the circumstances that led Christian to pursue HSCT in Calgary, and how he fared through the myeloablative protocol, including complications and resolutions. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to Jacob Kinch for engineering the audio to make this podcast possible. You can find us when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

    1 ч.
  8. Connect with Fiona to learn more about perseverance and Marburg’s variant of MS (Ep. 101)

    13.03.2024

    Connect with Fiona to learn more about perseverance and Marburg’s variant of MS (Ep. 101)

    Warrior: Fiona Mitten AI: Marburg’s variant of Multiple Sclerosis HSCT: 12/29/2011 Superpower: living in the moment Are you someone who believes that everything happens for a reason? How many moments do you treasure each day? Diagnosed 18 years ago after being hit by a drunk driver, several symptoms of multiple sclerosis like optic neuritis and paralysis onset and progressed so quickly, it seems Fiona’s experience was extra unique from the start. From bouts of total paralysis that kept her hospitalized for months at a time, to relief from rounds of chemotherapy that had her walking again, to severe withdrawal that led to chemo-induced psychosis, by the time Fiona found her way to HSCT, she was struggling to walk (a requirement to pass the testing in order to qualify for HSCT). Tune in to learn how Fiona became the third person to be transplanted outside of the trials in Calgary, how she fared with HSCT and recovery, and how she is doing twelve-plus years post-HSCT. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to Jacob Kinch for engineering the audio to make this podcast possible. You can find us when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

    1 ч. 18 мин.
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Illuminating the invisibilities of autoimmune disease. Designed to bring voice to HSCT journeys – highlight the snowflakes (individual experiences) and recognize our superpowers – because we are as unique in our HSCT journey as we are in our experience with autoimmune disease.

Информация

  • Автор
    Zen Jen Stansbury Koenig
  • Годы выхода
    2018 - 2025
  • Выпуски
    227
  • Ограничения
    С ненормативной лексикой
  • Авторские права
    © All rights reserved
  • Сайт подкаста
    HSCT Warriors