Shows
TARDE ABIERTATARDE ABIERTA T06C179 Recaudación de fondos para investigar sobre TANGO2, una enfermedad ultrarrara (26/05/2025)
Hablamos con Naty Tomás, la madre de Nora; Sergio Streitenberger, presidente del Rotary Club Murcia Norte, uno de los donantes, y María Luisa Cayuela, una de las investigadoras del IMIB, el Instituto Murciano de Investigación Biosanitaria.
2025-05-2611 min
Next Question with Katie CouricVoices of Resilience: Women Leaders in the Rare Disease CommunityToday, approximately 10,000 rare diseases collectively affect as many as 400 million people around the world, and women leaders have long been at the forefront of bringing awareness to these diseases and driving change. Katie Couric moderates a panel that includes Tania Simoncelli of Chan Zuckerberg Initiative, whose “Rare as One” campaign gives to rare disease researchers and support groups, Tara Zier who founded the Stiff Person Syndrome Research Foundation, Susan Dando of the Smith-Kingsmore Syndrome Foundation, and Dr. Christina Miyake, a researcher studying TANGO2 deficiency disorder. This panel will explore the resilience, determination, and ingenuity required to address the unique chal...2025-04-2140 min
Rare Care Chronicles"Can We Fix It?" by Kasha MorrisThis 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
Fin...2024-10-0113 minRare Care ChroniclesIgniting Hope Through ResearchListen 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
2024-07-1515 minRare Care ChroniclesBetween Hope and FearBetween 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: / ...2024-07-1527 minRare Care ChroniclesUncharted Youth: Caregiving in the Teen YearsJohn 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
2024-07-1515 minRare Care ChroniclesBeyond the DiagnosisA 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-rese2024-07-1541 minRare Care ChroniclesNurturing Gratitude: A Journaling Guide for CaregiversAmanda 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...2024-07-1129 minRare Care ChroniclesRare Care: Reducing Distress & Embracing Well-BeingAmanda 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: / tango2researchfound...2024-07-1140 minRare Care ChroniclesA Doctor's Discovery Ignites a Child's LegacyAnn 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...2024-07-1126 min
JIMD PodcastsB vitamins, drosophila and TANGO2-deficiency disorderThis podcast, and the first paper, are dedicated to the memory of Dr. Nassim Shahrzad, an accomplished scientist with a bright future who was taken from her family, friends and colleagues much too soon. May the memory of her warm smile, collegial nature and devotion to her family serve as a source of comfort and inspiration to all those who knew her.
In this podcast we return to TANGO2-deficiency disorder to hear from Dr Michael Sacher, Dr Christina Miyake and Dr Samuel Mackenzie, on how research in a drosophila disease model correlates with insights from natural history studies on...2023-03-1721 min
HCPLive PodcastsRare Disease Report: TANGO2In this hallmark episode, we discuss a condition that has only been documented in 70 cases worldwide. Dr. Amelle Shilligton is a clinical geneticist at Cincinnati Children's Hospital Medical Center.
In this conversation, Ashley and Jacob Wiley share the story of how they rushed their 15 month old daughter Aislynn to that hospital, and Dr. Shillington explains how she eventually solved the mystery of Aislynn's diagnosis of TANGO2-related metabolic encephalopathy and arrhythmias.
The rare genetic disorder is caused by variants in the TANGO2 gene and those with it can experience episodes of acute illness called metabolic crises. 2022-04-2832 min
Metabolizma Hastalıkları PodcastiTango2Dr. Sevil Dorum ile Tango2 ile ilişkili hastalıkları konuşuyoruz. Moderatör: Dr. Ayşe Kılıçİlgili makale linki: https://www.ncbi.nlm.nih.gov/books/NBK476443/ https://onlinelibrary.wiley.com/doi/10.1002/jimd.12314 https://www.sciencedirect.com/science/article/pii/S0929693X20302529?via%3Dihub Bizi instagram ve twitter hesaplarımızdan takip edebilirsiniz.Instagram: @metacademymetabolismTwitter: @metacademy2Yorum ve görüşleriniz, podcastimizde görmek istediğiniz konular için bize sosyal medya hesaplarımızdan ve mail adresimizden ulaşabilirsiniz.metacademymetabolism@gmail.com2022-01-2119 min
Unknown.FMFeral - DNB Dimensions - Unknown.FM [2021-10-09]Tracklisting:1 - Factor 5 (Tango Album Mix) - Tango2 - Darkage - DJ Solo3 - The Voice Of The Mind - The Criminal Minds4 - Phobia - Nookie5 - Terminator - Metalheads (Rufige kru)6 - Sinister [The Influence Remix] - Grooverider7 - Hello Darkness (Remix) - Bay B Kane8 - Dark Matter '93 - Kev Bird & The Wax Doctor96 - 6 Million Ways To Die (DJ Hype remix) - Uncle 2210 - Final Conflict - Tango & Ratty11 - The Pulse (DJ SS Dub Plate Remix) - DJ SS12 - Stormtrooper - DJ Mayhem13 - Scottie (Ray Keith remix) - Sub Nation14 - Get...2021-10-102h 59
CoRDS CastEpisode 30 - Tango2 Research FoundationIn this episode of CoRDS Cast, Alyssa interviews David Longman from the Tango2 Research Foundation, and Dr. Michael Sacher, who is a professor in the biology department at Concordia University. TANGO2 itself is a protein coding gene on chromosome 22 (22q11.21). TANGO2 has only recently been identified as a gene that contributes to human disease so there is not yet a deep understanding of the specifics around the underlying pathology and biochemical pathways affected. David is a loving father of a 3 year old who has Tango2. David works closely with researchers such as Dr. Sacher, and does great work with...2021-02-0622 min
JIMD PodcastsIt takes two to TANGO2The journal recently published two articles on TANGO2 deficiency, describing a case series of 20 patients and exploring the uncertain pathophysiology of this condition. Dr Sebastian Montealgre, Dr Pascale de Lonlay, Dr Felix Distelmaier and Dr Michael Sacher joined our social media editor to explain what they observed and the implications of those findings.
Clinical and biological characterization of 20 patients with TANGO2 deficiency indicates novel triggers of metabolic crises and no primary energetic defect
Claire‐Marine Bérat et al.
https://doi.org/10.1002/jimd.12314
The phenotype associated with variants in TANGO2 may be explained by a dual role of the protein in...2020-12-0420 min
Rare Disease ConnectionTANGO 2Hear from the experts in our conversations on a rare genetic disorder: TANGO2-related metabolic encephalopathy and arrhythmias. We cover TANGO2 Disease diagnosis, new treatment options, and how to connect with the TANGO2 Disease community. Experts in this episode include: *Seema Lalani, MD - Clinical geneticist at Texas Children's Hospital, and professor at Baylor College of Medicine. *Jayme Gilmore, DPT - Pediatric Physical Therapist. *Lindsey Messerschmidt, CCC-SLP - Licensed Speech Pathologist, and mom of three children born with TANGO2. More resources and information for you: raredisease.com/tango22020-09-0800 min