Rare Care Chronicles

TANGO2 Research Foundation
  • 5.0 (2)
  • NON-PROFIT

Rare Care Chronicles is a podcast series by the TANGO2 Research Foundation covering many topics including rare disease care, research, and experiences.

Episodes

  1. MAY 11

    Parent Roundtable

    Rare Care Chronicles: Parent Roundtable brings together TANGO2 parents David Longman, Amanda Hull, and Amy Clay for an honest conversation about the TANGO2 diagnosis journey. Hosted by T2RF Executive Director Ann Geffen, this episode explores early symptoms, the long search for answers, the impact of receiving a diagnosis, and how families find support, hope, and connection through the TANGO2 community.

    48 min

  2. 05/16/2025

    Veronica and Tyson's Story

    Isabella Riezler, Science Communications Manager at the Chan Zuckerberg Initiative (CZI), volunteered her time and talents to support the TANGO2 Research Foundation by capturing the story of this year's Ambassador Family: the Swetek-Jones family.In this heartfelt video, Veronica and Tyson share their journey to find a diagnosis for their daughter, Thea, and how that path led them to create the TANGO2 Family Facebook group—a vital space offering connection, information, and support for families impacted by TANGO2 Deficiency Disorder (TDD) around the world._____________________________________________________________For more information, go to: https://tango2research.org/Find us on Facebook: / tango2research Find us on Twitter: / tango2research Find us on Instagram: / tango2researchfoundation Find us on LinkedIn: / tango2-research-foundation

    29 min

  3. 10/01/2024

    "Can We Fix It?" by Kasha Morris

    This is a story about fixing an impossible problem in an unexpected way. Kasha Morris is a retired teacher that co-founded the TANGO2 Research Foundation with her husband Mike in 2018 after a fifteen-year diagnostic journey for their son Ryan. Faced with the reality of a life-limiting ultra rare genetic condition they got to work to help their son. Although TANGO2 was newly discovered, their search would take them back twenty years to uncover some answers in an unexpected place. To learn more, visit ⁠⁠⁠⁠⁠www.tango2research.org⁠⁠⁠⁠⁠. Find us on Facebook: ⁠⁠  / tango2research  ⁠⁠ Find us on X: ⁠⁠  / tango2research  ⁠⁠ Find us on Instagram: ⁠⁠  / tango2researchfoundation  ⁠⁠ Find us on LinkedIn: ⁠⁠  / tango2-research-foundation

    14 min

  4. 07/15/2024

    Igniting Hope Through Research

    Listen to Dr. Sam Mackenzie talk about what is happening now behind the scenes and the progress being made with TANGO2 deficiency disorder. About the TANGO2 Research Foundation: Our mission is to lead the way in finding a cure for TANGO2 deficiency disorder. To learn more, visit ⁠⁠⁠⁠www.tango2research.org⁠⁠⁠⁠. Find us on Facebook: ⁠  / tango2research  ⁠ Find us on X: ⁠  / tango2research  ⁠ Find us on Instagram: ⁠  / tango2researchfoundation  ⁠ Find us on LinkedIn: ⁠  / tango2-research-foundation

    16 min

  5. 07/15/2024

    Between Hope and Fear

    Between Hope and Fear: Facing a Potential Diagnosis with a New Pregnancy Meet Jake's parents and Erling's dad. Both Jake and Erling live with TANGO2 deficiency disorder (TDD). In anticipating another pregnancy, how did they cope with the fear of a possible TDD diagnosis with their 3rd child? Take a moment and listen to their story and their journeys of hope and fear. About the TANGO2 Research Foundation: Our mission is to lead the way in finding a cure for TANGO2 deficiency disorder. To learn more, visit ⁠⁠⁠⁠www.tango2research.org⁠⁠⁠⁠. Find us on Facebook: ⁠  / tango2research  ⁠ Find us on X: ⁠  / tango2research  ⁠ Find us on Instagram: ⁠  / tango2researchfoundation  ⁠ Find us on LinkedIn: ⁠  / tango2-research-foundation

    28 min

  6. 07/15/2024

    Uncharted Youth: Caregiving in the Teen Years

    John was diagnosed with TANGO2 deficiency disorder when he was a teen. His dad, Cesar joins us to answer questions and share with us what it's like to be a caregiver for teen. About the TANGO2 Research Foundation: Our mission is to lead the way in finding a cure for TANGO2 deficiency disorder. To learn more, visit ⁠⁠⁠www.tango2research.org⁠⁠⁠. Find us on Facebook: ⁠⁠  / tango2research  ⁠⁠ Find us on X: ⁠⁠  / tango2research  ⁠⁠ Find us on Instagram: ⁠⁠  / tango2researchfoundation  ⁠⁠ Find us on LinkedIn: ⁠⁠  / tango2-research-foundation

    15 min

  7. 07/15/2024

    Beyond the Diagnosis

    A doctor's Heartfelt Recollection of Heartbreak to Hope. An interview with TANGO2 Research Foundation’s Co-Founder Kasha Morris and Dr. Cheyenne Beach’s experience with TANGO2. They discuss Dr. Beach’s experience with the Morris Family, and what her involvement has meant to her and the community.  About the TANGO2 Research Foundation: Our mission is to lead the way in finding a cure for TANGO2 deficiency disorder. To learn more, visit ⁠⁠⁠www.tango2research.org⁠⁠⁠. Find us on Facebook:   / tango2research   Find us on X:   / tango2research   Find us on Instagram:   / tango2researchfoundation   Find us on LinkedIn:   / tango2-research-foundation

    41 min

  8. 07/11/2024

    Nurturing Gratitude: A Journaling Guide for Caregivers

    Amanda Hull is from Suffolk in England. She and husband, Daniel, have three boys; Joe, Sebby and Walter. Sebby is a 13-year-old diagnosed with TANGO2 Deficiency Disorder. Amanda has worked as an Educational Psychologist for the past 18 years, and discusses how to journal as an outlet for caregivers. About the TANGO2 Research Foundation: Our mission is to lead the way in finding a cure for TANGO2 deficiency disorder. To learn more, visit ⁠⁠www.tango2research.org⁠⁠. Find us on Facebook: ⁠  / tango2research  ⁠ Find us on X: ⁠  / tango2research  ⁠ Find us on Instagram: ⁠  / tango2researchfoundation  ⁠ Find us on LinkedIn: ⁠  / tango2-research-foundation

    29 min

  9. 07/11/2024

    Rare Care: Reducing Distress & Embracing Well-Being

    Amanda Hull is from Suffolk in England. She and husband, Daniel, have three boys; Joe, Sebby and Walter. Sebby is a 13-year-old diagnosed with TANGO2 Deficiency Disorder. Amanda has worked as an Educational Psychologist for the past 18 years, and discusses strategies for increased well-being for rare disease caregivers. About the TANGO2 Research Foundation: Our mission is to lead the way in finding a cure for TANGO2 deficiency disorder. To learn more, visit ⁠www.tango2research.org⁠. Find us on Facebook:   / tango2research   Find us on X:   / tango2research   Find us on Instagram:   / tango2researchfoundation   Find us on LinkedIn:   / tango2-research-foundation

    41 min

  10. 07/11/2024

    A Doctor's Discovery Ignites a Child's Legacy

    Ann Geffen, Executive Director of the TANGO2 Research Foundation interviews Marcie Lopez (mom to our TANGO2 angel Sammy) and Dr. Seema Lalani. Marcie and Dr. Lalani share their experience on how Dr. Lalani became the first person to recognize TANGO2 deficiency disorder and why she decided to get involved with the Foundation. About the TANGO2 Research Foundation: Our mission is to lead the way in finding a cure for TANGO2 deficiency disorder. To learn more, visit www.tango2research.org. Find us on Facebook:   / tango2research   Find us on X:   / tango2research   Find us on Instagram:   / tango2researchfoundation   Find us on LinkedIn:   / tango2-research-foundation

    26 min
  • 10 Episodes

Ratings & Reviews

5
out of 5
2 Ratings

About

Rare Care Chronicles is a podcast series by the TANGO2 Research Foundation covering many topics including rare disease care, research, and experiences.

Information

  • Creator
    TANGO2 Research Foundation
  • Years Active
    2024 - 2026
  • Episodes
    10
  • Rating
    Clean
  • Copyright
    © TANGO2 Research Foundation
  • Show Website
    Rare Care Chronicles