Rare Care Chronicles

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.

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/ [https://www.youtube.com/redirect?event=video_description&redir_token=QUFFLUhqbU54TmhsVDk2NTJBekxlZjRzclJQVXh2VW1YZ3xBQ3Jtc0trcUZOTUN4eHNPeWdLQy05TDVTUFU1WUhTWkl5VXpuY0VCdFdOTGdWV0lKMEg2LTgxbFlJY2l2QzNaa0VPYlZ4c1NDRWI4VjdGT1hQTTFXUkhDRzM4SF8yVXFzZlRxTS16bXItUzhKZFBZbHNrb1RaUQ&q=https%3A%2F%2Ftango2research.org%2F&v=IE_J_XcmiFc]Find us on Facebook: / tango2research Find us on Twitter: / tango2research Find us on Instagram: / tango2researchfoundation Find us on LinkedIn: / tango2-research-foundation

"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 [http://www.tango2research.org/]. Find us on Facebook: ⁠⁠  / tango2research  ⁠⁠ [https://www.youtube.com/redirect?event=video_description&redir_token=QUFFLUhqbnhHUUhtcUJpVmdLMmdPOTRfU0gxYjF2aXJpQXxBQ3Jtc0ttc00tendFd2JtRm5lb1BsRmhlRVREQklja1QzdzJ4ZW5PNlhvek1UOUpNa28yUzk5RnlFZmNiOVlpenpQMFYtdDVvbFVCRUw4aVJBeHVVSzZjWTM2eEdtWUNSbXNCSVBLem5ZVWVUODhtODdoNWRDbw&q=https%3A%2F%2Fwww.facebook.com%2Ftango2research&v=SjX5QGwbPUs] Find us on X: ⁠⁠  / tango2research  ⁠⁠ [https://www.youtube.com/redirect?event=video_description&redir_token=QUFFLUhqbnEwMFFydGl3SWI0N0ZuVlVUX1I5clRoZGs2QXxBQ3Jtc0trZktLTU1Ed0l0Qmpjdy1IVExiTHNCTkozamE3UjdGWlY1MUZydEhsZFIxTWtVMlRsOVVENWVNSlhwQ0hnZGp3MDJlLVRpdzE5bHZrX0pwZFJLekxGbDd2b250REZfdFdnbEVaQTQwbTZELThtRXFVcw&q=https%3A%2F%2Ftwitter.com%2Ftango2research&v=SjX5QGwbPUs] Find us on Instagram: ⁠⁠  / tango2researchfoundation  ⁠⁠ [https://www.youtube.com/redirect?event=video_description&redir_token=QUFFLUhqbTNLMllzZlctcG5BSGZmUTVZWkhLVGJvZGJiUXxBQ3Jtc0tuOU9KOU1qTUViQ2YxdTZldkFfNHRWaFd2TzB2dUFza3Q0bms2ZWdqNmtjZ3J5TnFNX25sMDFGT2ZJc0pvVEl4cHhsN3YtamJNQ0l6OWZ4cWwwUXFnbjg2U29CekdsY3o5WE8yRzJRR19SNUVObDJjZw&q=https%3A%2F%2Fwww.instagram.com%2Ftango2researchfoundation%2F&v=SjX5QGwbPUs] Find us on LinkedIn: ⁠⁠  / tango2-research-foundation   [https://www.youtube.com/redirect?event=video_description&redir_token=QUFFLUhqbDFCYksyR3FUQldSOFpYYXNRRmk3RmlDTjBhd3xBQ3Jtc0tud1JkVjVRVEFRZEVpTHBHMTE5RkxVa3B5amxWYkpWdkFOU2NVbnpBM05SaVJmQzQ2QmFDbDNyT3FTRGVlbnY5Y2cyakdiNTB3V2NrdUF3RW03cDVUcE1GNXRURUtNVnRTWnVZTGY5TjhhUm80WktnZw&q=https%3A%2F%2Fwww.linkedin.com%2Fcompany%2Ftango2-research-foundation%2F&v=SjX5QGwbPUs]

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 [http://www.tango2research.org/]. Find us on Facebook: ⁠  / tango2research  ⁠ [https://www.youtube.com/redirect?event=video_description&redir_token=QUFFLUhqbnhHUUhtcUJpVmdLMmdPOTRfU0gxYjF2aXJpQXxBQ3Jtc0ttc00tendFd2JtRm5lb1BsRmhlRVREQklja1QzdzJ4ZW5PNlhvek1UOUpNa28yUzk5RnlFZmNiOVlpenpQMFYtdDVvbFVCRUw4aVJBeHVVSzZjWTM2eEdtWUNSbXNCSVBLem5ZVWVUODhtODdoNWRDbw&q=https%3A%2F%2Fwww.facebook.com%2Ftango2research&v=SjX5QGwbPUs] Find us on X: ⁠  / tango2research  ⁠ [https://www.youtube.com/redirect?event=video_description&redir_token=QUFFLUhqbnEwMFFydGl3SWI0N0ZuVlVUX1I5clRoZGs2QXxBQ3Jtc0trZktLTU1Ed0l0Qmpjdy1IVExiTHNCTkozamE3UjdGWlY1MUZydEhsZFIxTWtVMlRsOVVENWVNSlhwQ0hnZGp3MDJlLVRpdzE5bHZrX0pwZFJLekxGbDd2b250REZfdFdnbEVaQTQwbTZELThtRXFVcw&q=https%3A%2F%2Ftwitter.com%2Ftango2research&v=SjX5QGwbPUs] Find us on Instagram: ⁠  / tango2researchfoundation  ⁠ [https://www.youtube.com/redirect?event=video_description&redir_token=QUFFLUhqbTNLMllzZlctcG5BSGZmUTVZWkhLVGJvZGJiUXxBQ3Jtc0tuOU9KOU1qTUViQ2YxdTZldkFfNHRWaFd2TzB2dUFza3Q0bms2ZWdqNmtjZ3J5TnFNX25sMDFGT2ZJc0pvVEl4cHhsN3YtamJNQ0l6OWZ4cWwwUXFnbjg2U29CekdsY3o5WE8yRzJRR19SNUVObDJjZw&q=https%3A%2F%2Fwww.instagram.com%2Ftango2researchfoundation%2F&v=SjX5QGwbPUs] Find us on LinkedIn: ⁠  / tango2-research-foundation   [https://www.youtube.com/redirect?event=video_description&redir_token=QUFFLUhqbDFCYksyR3FUQldSOFpYYXNRRmk3RmlDTjBhd3xBQ3Jtc0tud1JkVjVRVEFRZEVpTHBHMTE5RkxVa3B5amxWYkpWdkFOU2NVbnpBM05SaVJmQzQ2QmFDbDNyT3FTRGVlbnY5Y2cyakdiNTB3V2NrdUF3RW03cDVUcE1GNXRURUtNVnRTWnVZTGY5TjhhUm80WktnZw&q=https%3A%2F%2Fwww.linkedin.com%2Fcompany%2Ftango2-research-foundation%2F&v=SjX5QGwbPUs]

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 [http://www.tango2research.org/]. Find us on Facebook: ⁠  / tango2research  ⁠ [https://www.youtube.com/redirect?event=video_description&redir_token=QUFFLUhqbnhHUUhtcUJpVmdLMmdPOTRfU0gxYjF2aXJpQXxBQ3Jtc0ttc00tendFd2JtRm5lb1BsRmhlRVREQklja1QzdzJ4ZW5PNlhvek1UOUpNa28yUzk5RnlFZmNiOVlpenpQMFYtdDVvbFVCRUw4aVJBeHVVSzZjWTM2eEdtWUNSbXNCSVBLem5ZVWVUODhtODdoNWRDbw&q=https%3A%2F%2Fwww.facebook.com%2Ftango2research&v=SjX5QGwbPUs] Find us on X: ⁠  / tango2research  ⁠ [https://www.youtube.com/redirect?event=video_description&redir_token=QUFFLUhqbnEwMFFydGl3SWI0N0ZuVlVUX1I5clRoZGs2QXxBQ3Jtc0trZktLTU1Ed0l0Qmpjdy1IVExiTHNCTkozamE3UjdGWlY1MUZydEhsZFIxTWtVMlRsOVVENWVNSlhwQ0hnZGp3MDJlLVRpdzE5bHZrX0pwZFJLekxGbDd2b250REZfdFdnbEVaQTQwbTZELThtRXFVcw&q=https%3A%2F%2Ftwitter.com%2Ftango2research&v=SjX5QGwbPUs] Find us on Instagram: ⁠  / tango2researchfoundation  ⁠ [https://www.youtube.com/redirect?event=video_description&redir_token=QUFFLUhqbTNLMllzZlctcG5BSGZmUTVZWkhLVGJvZGJiUXxBQ3Jtc0tuOU9KOU1qTUViQ2YxdTZldkFfNHRWaFd2TzB2dUFza3Q0bms2ZWdqNmtjZ3J5TnFNX25sMDFGT2ZJc0pvVEl4cHhsN3YtamJNQ0l6OWZ4cWwwUXFnbjg2U29CekdsY3o5WE8yRzJRR19SNUVObDJjZw&q=https%3A%2F%2Fwww.instagram.com%2Ftango2researchfoundation%2F&v=SjX5QGwbPUs] Find us on LinkedIn: ⁠  / tango2-research-foundation   [https://www.youtube.com/redirect?event=video_description&redir_token=QUFFLUhqbDFCYksyR3FUQldSOFpYYXNRRmk3RmlDTjBhd3xBQ3Jtc0tud1JkVjVRVEFRZEVpTHBHMTE5RkxVa3B5amxWYkpWdkFOU2NVbnpBM05SaVJmQzQ2QmFDbDNyT3FTRGVlbnY5Y2cyakdiNTB3V2NrdUF3RW03cDVUcE1GNXRURUtNVnRTWnVZTGY5TjhhUm80WktnZw&q=https%3A%2F%2Fwww.linkedin.com%2Fcompany%2Ftango2-research-foundation%2F&v=SjX5QGwbPUs]