TANGO2 Research Foundation

?? Tomorrow's the day! Don't miss out on Part 3 of our engaging four-part workshop series live on Zoom, happening tomorrow, November 22nd at 12 p.m EST. This session will be focusing on key strategies for meaningful engagement in TANGO2 research. This is your chance to be part of a powerful conversation that puts patients at the heart of future research for TANGO2 Deficiency Disorder (TDD). In this workshop, we’ll continue refining the research priorities that were established in Workshop 1, drawing on examples of patient-centered research from other rare diseases. Our goal? To ensure that TDD research truly reflects the needs and experiences of our TANGO2 warriors and their families. Don’t miss this incredible opportunity to engage with clinicians, researchers, stakeholders, and fellow family members—all working together to make a lasting impact on the lives of those affected by TDD. ?? Register now to join the conversation and help shape the future of TANGO2 research: https://bit.ly/3YbcwB6 Let’s ensure that our community’s voice is heard loud and clear in the development of research that matters most. We need YOU to help us build a brighter future for our TANGO2 warriors. ??? #TANGO2ResearchFoundation #TANGO2Community #RareDisease #PatientCenteredResearch #TANGO2Warriors

For families in the rare disease community, the path to a diagnosis can be a long and challenging journey, often taking years to reach an accurate conclusion. But we're determined to change that. In August 2022, we launched our Early Detection and Diagnostic Committee with a clear mission: to cut down the time it takes to diagnose TANGO2 deficiency disorder (TDD) and ensure that families get the care and support they need, sooner. This dedicated team has been tirelessly advocating for faster, more accurate diagnoses and making remarkable strides along the way. Here’s what we’ve accomplished so far: ? Successfully advocated for the inclusion of TDD on gene panels, speeding up the diagnostic process. ? Ensured accurate, clear language about TDD on various medical websites, improving awareness and understanding. ? Co-authored and branded a critical TDD resource for the Hispanic community in Mexico, broadening our impact. ? Expanded our committee from 4 to 9 passionate individuals, strengthening our efforts and outreach. ? Participated in Global Genes’ Rare Disease Mentoring program, connecting with other leaders in rare disease advocacy. Every milestone brings us closer to our goal: saving lives, improving quality of life, and making the diagnostic journey shorter and less daunting for every family affected by TDD. Together, we’re making a difference, one breakthrough at a time. ?? #TANGO2ResearchFoundation #EarlyDetection #RareDiseaseAwareness #TANGO2Community #HopeForRareDiseases

In 2019, the TANGO2 Family Conference marked a pivotal moment for the TANGO2 Research Foundation, just a year after its inception. It was here that the true power of patient voices began to shine through. Families participating in a groundbreaking Natural History Study (NHS) shared their experiences, answering over 100 questions about their children to uncover patterns related to TANGO2 Deficiency Disorder (TDD). Even with just 12 patients involved at that time, a significant pattern began to emerge—children who had never experienced a life-threatening crisis were taking vitamins, particularly B vitamins. This was more than a coincidence; it was a potential breakthrough. Fast forward to the present and the evidence has only grown stronger, with nearly 100 contributors now participating in the NHS. The findings are compelling: children who take B vitamins exhibit a reduced risk of metabolic crises. But the benefits don’t stop there. A publication from the NHS reveals that vitamin supplementation not only helps prevent these crises but also enhances neurological outcomes. The positive impact of B vitamins has been observed not just in children but also in their siblings, further emphasizing their importance. The research goes even deeper. Studies using fruit flies with TDD symptoms have demonstrated the corrective effects of B5, while another study using TDD heart cells has established that B9 can help correct heart arrhythmias. These findings underscore the crucial role of patient participation in driving research and discovering life-changing interventions. The voices of our community have turned hope into action, leading to breakthroughs that are making a real difference in the lives of those affected by TDD. Together, we are not just witnessing the power of vitamins—we are witnessing the power of community, science, and unwavering determination. ?? #TANGO2ResearchFoundation #TANGO2Disease #TDDResearch #TANGO2Community #PatientVoicesMatter

?? Meet Heloisa, a courageous 6-year-old TANGO2 Warrior from S?o Paulo, Brazil! ?? Heloisa’s joy for life shines brightest when she's in the water, swimming her heart out at the club pool. When she's not in the water, you'll find her dancing up a storm or whipping up sweet treats with her family. Her zest for life, resilience, and boundless curiosity inspire us all to keep pushing forward. ?? Heloisa, your strength and spirit remind us that with heart and perseverance, anything is possible. We’re so excited to see all the amazing things you’ll continue to achieve—keep soaring, beautiful warrior! ??? __________________________________________________ Heloisa Oliveira, 6 anos. S?o Paulo, Brasil. Nossa guerreira TANGO2 ama nadar, sua atividade física preferida. Sempre que pode pede para ir ao clube e aproveitar momentos de piscina, Minha guerreira também ama dan?ar, cozinhar delícias doces. Sua alegria e educa??o s?o grandes qualidades. #TANGO2Warrior #TANGO2ResearchFoundation #CommunityOfHope #TANGO2Community

Not only can sweet potatoes can boost your intake of important vitamins, minerals, and antioxidants, but they are also a good source of vitamin B7. Not a sweet potato fan? B7 is also found in eggs, salmon, beef, liver, pork, nuts and seeds. Early research data suggests that B vitamins may play a very important role in the health of those affected with TANGO2 related disease. Vitamin B7 is a water-soluble vitamin that helps the body metabolize fats, carbohydrates, and protein. It also helps maintain a healthy nervous system, nails, hair and skin, among other functions. #TANGO2ResearchFoundation

Our TANGO2 Deficiency Disorder Research Learning Network is your gateway to join forces with researchers, clinicians, and families worldwide—all focused on advancing TANGO2 research. Supported by PCORI, this dynamic platform goes beyond traditional forums, offering a space for collaboration, groundbreaking ideas, and real discoveries. Dive into discussions on the latest TANGO2 treatments, B Vitamin dosages, symptom management, and new strategies. ?? Whether you want to share your insights, learn from experts, or stay updated, this is your essential resource for making a real impact. Don’t miss out! Join today and be part of shaping the future of TANGO2 care. ?? ?? Sign up now: https://bit.ly/3SLMp0G #TANGO2ResearchFoundation #TANGO2Community #RareDisease #TANGO2

We understand the profound heartache of losing a loved one to TANGO2 deficiency disorder, and we are here to honor their memory. Sammy’s Angels Wall is a sacred space on our website dedicated to celebrating the lives and legacies of our beloved TANGO2 angels—those whose journeys have ended far too soon. This wall, named in memory of Sammy Lopez, whose courageous story led to the discovery and understanding of TANGO2 deficiency disorder, stands as a testament to the love, strength, and resilience of every TANGO2 warrior. By sharing your loved one’s story and photos, you allow us to keep their spirit alive and inspire others facing similar journeys. If you’d like to honor your TANGO2 angel, please visit our website here: https://bit.ly/4hILade to submit their story and photo. Together, let’s preserve their legacy, share their light, and remind the world that their lives made an impact. #TANGO2ResearchFoundation #SammysAngels #TANGO2Community #TANGO2Support

Join us one week from today, on November 22nd at 12 p.m EST for Part 3 of our four-part virtual workshop series, focusing on key strategies for meaningful engagement in TANGO2 research. This is your chance to be part of a powerful conversation that puts patients at the heart of future research for TANGO2 Deficiency Disorder (TDD). In this workshop, we’ll continue refining the research priorities that were established in Workshop 1, drawing on examples of patient-centered research from other rare diseases. Our goal? To ensure that TDD research truly reflects the needs and experiences of our TANGO2 warriors and their families. Don’t miss this incredible opportunity to engage with clinicians, researchers, stakeholders, and fellow family members—all working together to make a lasting impact on the lives of those affected by TDD. ?? Register now to join the conversation and help shape the future of TANGO2 research: https://bit.ly/3YbcwB6 Let’s ensure that our community’s voice is heard loud and clear in the development of research that matters most. We need YOU to help us build a brighter future for our TANGO2 warriors. ??? #TANGO2ResearchFoundation #TANGO2Community #RareDisease #PatientCenteredResearch #TANGO2Warriors

Thanks to the support of our amazing donors we have been able to fund critical research studies in our pursuit of finding a cure for TANGO2 deficiency disorder. One such study that was presented at the 2022 TANGO2 Research Foundation Family Conference revealed the positive affects of B-Vitamins for individuals with TANGO2 disease. Since then, the outpouring of B-Vitamin success stories from the families in our community have been pouring in. So many families are reporting amazing progress thanks to the help of B-Vitamins! We want to share the excitement around this breakthrough, and what it has meant for so many of our TANGO2 warriors around the world. Together, with hope and persistence, we can achieve more. Here's to a future filled with more stories of triumph, and a world where TANGO2 disease is but a chapter of the past. Help us fund our next TANGO2 breakthrough.During this season of giving, we humbly ask for your support to help us reach a goal of raising $10,000 for our mission. Every step forward, every breakthrough, and every family impacted by our work has been made possible because of the generosity of donors like you. To learn more and donate, visit: https://bit.ly/3VnqcVp #TANGO2ResearchFoundation

You probably already knew that broccoli is a rich source of vitamins, minerals, and antioxidants with health benefits that support immunity and aid in digestion. But did you know it's a good source of vitamin B5? Not a broccoli fan? B5 is widely found in both plants and animals, including meat, vegetables, cereal grains, legumes, eggs, and milk. Early research data suggests that B vitamins may play a very important role in the health of those affected with TANGO2 related disease. Vitamin B5 is a water-soluble vitamin from the B group of vitamins that helps produce energy by breaking down fats and carbohydrates. #TANGO2ResearchFoundation