Generated by All in One SEO v4.9.10, this is an llms.txt file, used by LLMs to index the site. # TANGO2 Research Foundation Better Understanding Through Research ## Sitemaps - [XML Sitemap](https://tango2research.org/sitemap.xml): Contains all public & indexable URLs for this website. ## Posts - [TDD Research Pathways Grant Applications Opening Soon!](https://tango2research.org/tdd-research-pathways-grant-applications-opening-soon/) - We are excited to announce the TDD Research Pathways Grant, a new funding opportunity for early-career researchers advancing TANGO2 research. This grant supports pilot projects and innovative research initiatives that will expand scientific understanding and improve outcomes for individuals living with TANGO2 Deficiency Disorder. This funding opportunity has been made possible through the generous support - [Welcome, Daniella!](https://tango2research.org/welcome-daniella/) - We are excited to welcome Daniella DeLorenze as TANGO2 Research Foundation’s new Accounting Specialist consultant. Daniella brings more than a decade of experience as an independent contractor, working with nonprofits and small businesses in finance, strategic development, and workflow processes. With a background in law, communications, customer service, and nonprofit support., In her role with - [Hero Highlight: David Longman](https://tango2research.org/hero-highlight-david-longman/) - We are excited to celebrate this month’s Hero Highlight, David Longman! David has been involved with the TANGO2 Research Foundation since 2019 and currently serves as a board member and member of the Research Committee. He became involved because of his commitment to helping his child, and other TANGO2 Warriors, have the best life possible. - [Hero Highlight: Amy Clay](https://tango2research.org/hero-highlight-amy-clay/) - We are excited to celebrate this month's Hero Highlight: Amy Clay! Amy has been a valued member of the TANGO2 community since 2017, serving on the Fundraising and Outreach Committees and as the East Regional Coordinator. As the mother of Katie, AKA DJ Icecat, a TANGO2 warrior, Amy found a sense of connection and understanding - [We’re Hiring: Part-Time Accountant](https://tango2research.org/were-hiring-part-time-accountant/) - The Foundation is growing, and we’re excited to share that we are hiring a part-time Bookkeeper/Accountant to support our mission. This role plays a critical part in maintaining the Foundation’s financial health and transparency. They will help us manage multiple funding streams, including grants, donations, and corporate giving while ensuring accurate reporting and compliance. We’re - [TANGO2 Hero Highlight: Agustin Lujan, MD, PHD](https://tango2research.org/tango2-hero-highlight-agustin-lujan-md-phd/) - We are thrilled to spotlight this month’s Hero Highlight, Dr. Agustin “Agu” Lujan. Dr. Lujan is a physician-scientist and T2RF Research Committee member dedicated to advancing research in pediatric rare diseases, including TANGO2 deficiency disorder. Based at Hospital Sant Joan de Déu in Barcelona, Spain, he works within the neuromuscular and arrhythmia/sudden death units, bridging - [Hero Highlight: Dr. Kuntal Sen](https://tango2research.org/hero-highlight-dr-kuntal-sen/) - We’re excited to spotlight this month’s Hero Highlight, Dr. Kuntal Sen! Dr. Sen is the Director of the Mitochondrial Disorders Program and Co-Director of the Neurogenetics Clinic at Children’s National Hospital. With specialized training in both neurology and genetics, he brings unique expertise to diagnosing and caring for individuals with complex and ultra-rare neurological conditions. He - [TANGO2 Leaders Share Insights at Rare Disease Symposium](https://tango2research.org/tango2-leaders-share-insights-at-rare-disease-symposium/) - On February 27th, Foundation co-founder, Kasha Morris, Research Director, Deena Chisholm, and TANGO2 parent, Veronica Jones Swetek attended and presented at the Rady Children’s Health Orange County & UC Irvine Rare Disease Symposium & Family Conference. During the panel discussion, the three shared their experiences navigating the rare disease community, focusing on the realities of - [The TANGO2 Research Foundation 2025 Annual Report Is Here](https://tango2research.org/the-tango2-research-foundation-2025-annual-report-is-here/) - We are proud to share the TANGO2 Research Foundation’s 2025 Annual Report—a reflection of a year defined by growth, progress, and meaningful impact. This report represents more than a summary of accomplishments. It tells the story of how far our community has come together and how significantly the Foundation has expanded its reach and influence - [Fueling the Future of TANGO2 Research & Innovation](https://tango2research.org/fueling-the-future-of-tango2-research-innovation/) - We are thrilled to share that we more than tripled our year-end fundraising goal of $10,000, raising nearly $35,000 in support of TANGO2 innovation and research. This incredible achievement was made possible by the unwavering generosity of our families and community—thank you for believing in this work and in one another. A special and heartfelt - [TANGO2 Innovation Summit: Advancing Evidence-Based Acute Clinical Care](https://tango2research.org/tango2-innovation-summit-advancing-evidence-based-acute-clinical-care/) - Earlier this month, the TANGO2 Research Foundation hosted leading TANGO2 medical professionals for the TANGO2 Innovation Summit, a collaborative event focused on advancing acute care for individuals with TANGO2 deficiency disorder (TDD). The goal of the summit was to standardize best practices, gain clinical consensus and publish evidence-based acute care clinical guidelines through expert collaboration, - [Welcoming Alison Bell to our PCORI Team](https://tango2research.org/welcoming-alison-bell-to-our-pcori-team/) - The TANGO2 Research Foundation is thrilled to welcome Alison Bell as its Research Project Coordinator. For the next year Alison will support research activities for the TANGO2 Research Foundation’s newest PCORI Eugene Washington Engagement Award. You can read about our previous PCORI Eugene Washington Engagement Award funding here. In this role, Alison will support the - [Giuseppe Pochettino Turns 80 — and Gives the Gift of Hope to TANGO2 Families](https://tango2research.org/giuseppepochettino/) - 🎉 Celebration of Giuseppe Pochettino’s 80th Birthday On the occasion of his 80th birthday, Giuseppe Pochettino, grandfather of Edoardo, chose to mark this important milestone in a special way by inviting friends and relatives to support the Tango2 Research Foundation through a donation in place of traditional gifts. Thanks to the generosity of all participants, - [TDD Fundraiser Spotlights](https://tango2research.org/tdd-fundraiser-spotlights/) - We are so grateful to our amazing supporters who continue to make a difference for the TANGO2 Research Foundation! On September 20, 2025, the Galland family hosted the 1st Annual Big Rivers Splash & Dash in New Caney, TX, in honor of their daughter Megan, a true TANGO2 warrior. A total of 247 participants ran - [Strengthening the Rare Disease Community: T2RF Leaders Selected as Mentors](https://tango2research.org/strengthening-the-rare-disease-community-t2rf-leaders-selected-as-mentors/) - Ann Geffen, Executive Director of the TANGO2 Research Foundation (T2RF), has been invited to serve as a mentor in the FasterCures and Chan Zuckerberg Initiative (CZI) Rare As One Mentorship Program. Ann was selected for her expertise in nonprofit leadership and her thoughtful approach to organizational development. In this role, she will provide guidance on - [A Legacy of Love and Generosity- Honoring the Memory of Giorgio Trabucco](https://tango2research.org/a-legacy-of-love-and-generosity-honoring-the-memory-of-giorgio-trabucco/) - In loving memory of Giorgio Trabucco, whose light will forever shine in our hearts, we reflect on a beautiful act of generosity made in his honor. Amid profound loss, Giorgio’s family and friends chose to celebrate his life in a way that brings hope to others. We are especially moved by Letizia and Andrea, who, - [Hero Highlight- Dr. Nicolas Abreu](https://tango2research.org/hero-highlight-dr-nicolas-abreu/) - We are pleased to highlight Dr. Nicolas Abreu, a board-certified child neurologist and neurodevelopmental disabilities specialist as our Monthly Hero! Dr. Abreu joined the TANGO2 Research Foundation’s Scientific Advisory Board 18 months ago. After caring for a child with TANGO2 Deficiency Disorder (TDD), he was deeply moved by the diagnostic and treatment challenges families face. - [Congratulations to Ann Geffen on her Five-Year Anniversary with the TANGO2 Research Foundation](https://tango2research.org/congratulations-to-ann-geffen-on-her-five-year-anniversary-with-the-tango2-research-foundation/) - This July marks Ann Geffen's five-year anniversary with the TANGO2 Research Foundation. On behalf of the board of directors, I want to congratulate and thank Ann for her remarkable service over these past five years. As Executive Director, Ann brings all of herself to the role each day, leading with characteristic diligence, compassion, and an - [Hero Highlight: The Swetek-Jones Family](https://tango2research.org/hero-highlight-the-swetek-jones-family/) - This month, we are highlighting our 2025 Ambassador Family, the Swetek Jones family! Veronica and Tyson have been a vital part of the TANGO2 community since the beginning. Following the diagnosis of their daughter, Thea, they created the TANGO2 Family Facebook group—a vital space offering connection, information, and support for families impacted by TDD around - [Hero Highlight- Dr. Christina Miyake](https://tango2research.org/hero-highlight-dr-christina-miyake/) - Dr. Christina Miyake, a pediatric cardiologist and Director of the Cardiovascular Genetics Arrhythmia Program at Baylor College of Medicine, is a founding member of our Scientific Advisory Board and a key leader of the TANGO2 Natural History Study. Her work focuses on better understanding this disease from all aspects—clinical, bench research, and family and patient - [A Remarkable Discovery: The Oldest Known Case of TDD](https://tango2research.org/a-remarkable-discovery-the-oldest-known-case-of-tdd/) - We’re excited to share a groundbreaking new development in TANGO2 research that brings both hope and new insights to our community. A recently published case report has identified the oldest known living individual diagnosed with TANGO2 Deficiency Disorder (TDD) — a 61-year-old man — extending the known age range of TDD by more than 20 - [Hero Highlight: Amanda Hull](https://tango2research.org/hero-highlight-amanda-hull/) - Amanda Hull joined the community in 2018, seeking connection, support, and hope for her son Sebby. Based in Suffolk, United Kingdom, Amanda is a dedicated mother of three and works as an educational psychologist. She plays a vital role in the Foundation as a member of the Fundraising Committee, UK Regional Coordinator, and PCORI Stakeholder - [Hero Highlight: Joyce Lombardi](https://tango2research.org/hero-highlight-joyce-lombardi/) - We are very excited to share our March Hero Highlight, Joyce Lombardi! When Kasha and Mike founded the TANGO2 Research Foundation in 2018 to advance research for their son, Ryan, and others with TDD, Joyce became one of its strongest advocates and biggest donors. As Ryan’s aunt, she has always been his biggest fan—cheering him - [Shine a Light on TANGO2 - Wishing Our T2RF Cycle 5 Grant Applicants the Best of Luck!](https://tango2research.org/shine-a-light-on-tango2-wishing-our-t2rf-cycle-5-grant-applicants-the-best-of-luck/) - The TANGO2 Research Foundation is thrilled to announce the successful submission of full proposals for our Cycle 5 grant program on Friday, February 28, 2025. This cycle, seven applicants from around the world—including Spain, Italy, Germany, Canada, and the U.S.—were invited to submit full proposals as we continue our commitment to advancing TANGO2 Deficiency Disorder - [Raising Awareness for TANGO2 Deficiency Disorder on Rare Disease Day!](https://tango2research.org/raising-awareness-for-tango2-deficiency-disorder-on-rare-disease-day/) - Rare Disease Day is a global initiative dedicated to raising awareness for the over 300 million people worldwide living with a rare condition. Today is our moment to amplify the voices of our TANGO2 community. Every story matters, whether in person or on social media, today is an especially important day to build community. Educate - [Hero Highlight: Maria Jose (Majo) Arredondo—A Passionate Advocate for TANGO2 Families](https://tango2research.org/hero-highlight-maria-jose-majo-arredondo-a-passionate-advocate-for-tango2-families/) - This month, we celebrate the exceptional work of Maria Jose (Majo) Arredondo, one of this year’s Emerging Researcher Award winners. Affectionately known as Majo, she is a clinician at Baylor College of Medicine’s Texas Children’s Hospital and the Project Coordinator for the TANGO2 Natural History Study. Her dedication to TANGO2 research goes beyond her role, - [Exciting NIH Grant Award Announcement for TANGO2 Deficiency Disorder Research](https://tango2research.org/exciting-nih-grant-award-announcement-for-tango2-deficiency-disorder-research/) - We are excited to share that Dr. Christina Miyake, a T2RF clinical research collaborator from Baylor College of Medicine has received a prestigious grant from the National Heart, Lung, and Blood Institute (NHLBI), a division of the National Institutes of Health (NIH), to advance research on TANGO2 Deficiency Disorder (TDD). This critical funding will support - [Campfires and Community: Raising Awareness for TANGO2 in Italy](https://tango2research.org/campfires-and-community-raising-awareness-for-tango2-in-italy/) - A remarkable group of friends in Italy recently came together to make a meaningful impact for the TANGO2 community. For over a decade, this group has organized festive gatherings to raise funds for impactful causes. This year, inspired by Anna and Paolo, parents of TANGO2 Warrior Lorenzo, the group chose to support the TANGO2 Research - [T2RF Highlighted in Endpoints News](https://tango2research.org/t2rf-highlighted-in-endpoints-news/) - TANGO2 Research Foundation Highlighted in Endpoints News We are thrilled to share that the TANGO2 Research Foundation was recently featured in Endpoints News in an article titled, “The key to faster, more impactful research? Put patients in the driver’s seat.” This recognition shines a spotlight on the vital role our Foundation plays in advancing research - [November's Hero Highlight](https://tango2research.org/novembers-hero-highlight/) - This month’s Hero Highlight is Joanne Barmasse, who has been supporting the TANGO2 Research Foundation since its inception in 2017. Joanne’s passion for helping families impacted by TDD is evident in her tireless efforts, including helping coordinate the biennial benefit dinner and auction, serving on the T2RF Fundraising Committee, and personally fundraising for the foundation. - [Highlights from the Milken Institute Health Summit: "Beyond Checkboxes” Panel](https://tango2research.org/highlights-from-the-milken-institute-health-summit-beyond-checkboxes-panel/) - On November 13th and14th the Milken Institute’s Health Summit brought together over 1,200 leaders from across the healthcare spectrum to discuss innovative solutions to pressing health challenges. A standout moment was TANGO2 Research Foundation’s Director of Research Engagement Deena Chisholm's panel presentation, "Beyond Checkboxes: Elevating Diversity and Representativeness in Patient Engagement." Deena emphasized the importance - [Introducing Our New Outreach Committee Chair](https://tango2research.org/introducing-our-new-outreach-committee-chair/) - We are thrilled to introduce Robin Mitchell as our new Outreach Committee Chair! Robin is the mother of Hanna, a TANGO2 warrior, and a passionate advocate. Following Hanna’s diagnosis at age 27 after a life-threatening metabolic crisis, Robin became actively involved with the TANGO2 Research Foundation as a Regional Coordinator supporting families in her area. - [Exciting Updates- GuideStar Seal, RARE Advocacy Summit & Amgen Global Advocate Grant](https://tango2research.org/exciting-updates-guidestar-seal-rare-advocacy-summit/) - We Have Some Exciting Updates! The TANGO2 Research Foundation is dedicated to providing transparent and accessible information about our mission, strategies, and impact. In line with this commitment, we are proud to announce the following updates: Candid Gold Seal of Transparency We’ve earned the Candid Gold Seal of Transparency! This milestone demonstrates our dedication to - [New Digital Content, TANGO2 Talk, and More!](https://tango2research.org/new-digital-content-tango2-talk-and-more/) - The TANGO2 Research Foundation is thrilled to share our latest updates, made possible by the incredible support and fundraising efforts of our community! NEW DIGITAL CONTENT: RARE CARE CHRONICLES PODCASTS We are excited to introduce Rare Care Chronicles, our new podcast available on Spotify and Apple Podcasts! Our podcast is dedicated to exploring the unique - [The Morris Family Announces $2.5 Million Gift to the TANGO2 Research Foundation](https://tango2research.org/morrisgift/) - Dear TANGO2 Community and Board Members, We’re excited to share that we will be donating $2.5 million to the TANGO2 Research Foundation to support the vital work of advancing research and making a difference in the lives of those impacted by TANGO2 Deficiency Disorder (TDD). Our plan is to distribute these funds to the foundation - [2024 TANGO2 Family Conference Recap](https://tango2research.org/2024-tango2-family-conference-recap/) - Last week, 145 TANGO2 families, staff, researchers, caregivers, speakers, and clinicians gathered at the stunning Disney Coronado Springs Resort for the third TANGO2 Family Conference, held from June 23rd to 25th. This exciting event featured a pizza and pool party, opportunities to participate in the Natural History Study, engaging speakers, interactive discussion sessions, and much - [Welcoming Destiny Braden to the TANGO2 Research Foundation Team](https://tango2research.org/welcoming-destiny-braden-to-the-tango2-research-foundation-team/) - We are pleased to announce the newest addition to our team, Destiny Braden, who joins us as our Development and Operations Associate. With Destiny on board, we are excited to expand and grow as a Foundation, ensuring that our mission to serve our families is stronger than ever. Destiny will play a critical role in - [Welcoming Samantha Irving to our PCORI Stakeholder Team](https://tango2research.org/welcoming-samantha-irving-to-our-pcori-stakeholder-team/) - The TANGO2 Research Foundation (T2RF) is thrilled to announce another significant addition to our team as we continue our dedicated mission of serving TANGO2 families and advancing research into TANGO2 deficiency disorder. Thanks to the generous support from Patient-Centered Outcomes Research Institute’s (PCORI) Eugene Washington Engagement Award, we are bolstering our efforts to foster a - [Welcoming Jonathan Scaccia to Our PCORI Project Stakeholder Team](https://tango2research.org/welcoming-jonathan-scaccia-to-our-pcori-project-stakeholder-team/) - The TANGO2 Research Foundation (T2RF) is thrilled to announce a significant addition to our team as we continue our dedicated mission of serving TANGO2 families and advancing research into TANGO2 deficiency disorder (TDD). Thanks to the generous support from Patient-Centered Outcomes Research Institute's (PCORI) Eugene Washington Engagement Award, we are bolstering our efforts to foster - [We're Expanding Our Team to Serve Our Mission Even Better](https://tango2research.org/jobspost/) - At the TANGO2 Research Foundation, we're excited to announce that we are seeking an addition to our team. We are searching for a Development and Operations Associate to ensure the smooth functioning of our organization, with a primary focus on fundraising and operational support. The Development and Operations Associate will spearhead fundraising efforts, collaborating with - [Rare Disease Day Kicks Off Our Biggest Campaign of The Year!](https://tango2research.org/rare-disease-day-kicks-off-our-biggest-campaign-of-the-year/) - TANGO2 Deficiency Disorder is so rare that fewer than 150 cases have been reported worldwide, primarily in young children. The disorder, which results from a variation in the TANGO2 gene, can cause seizures that result in brain damage as well as life-threatening irregular heart rates. The disorder has proved fatal by age 9 in about - [Dr. Andrea Wilderman is Presented with a $20,000 Research Grant from Uplifting Athletes & the TANGO2 Research Foundation](https://tango2research.org/dr-andrea-wilderman-is-presented-with-a-20000-research-grant-from-uplifting-athletes-the-tango2-research-foundation/) - From The Lilei Zhang Lab at Baylor College of Medicine, Dr. Andrea Wilderman is Presented with a $20,000 Research Grant from Uplifting Athletes & the TANGO2 Research Foundation Uplifting Athletes, a nonprofit organization dedicated to serving the rare disease community, has announced that Dr. Wilderman from the Lilei Zhang Laboratory at Baylor College of Medicine, - [](https://tango2research.org/2510-2/) - As the year draws to a close and we gather with our loved ones to celebrate the season, we take a moment to reflect upon the breakthroughs and blessings of the past months. Our hearts are warmed not just by the promising research surrounding B-vitamins and TANGO2 disease, but by the tangible, real-life stories of - [TANGO2 Benefit Banquet & Auction Shines in Connecticut,  Raising Over $55,000 for Research](https://tango2research.org/tango2-benefit-banquet-auction-shines-in-connecticut-raising-over-55000-for-research/) - On a beautiful Sunday evening at the Saint Clements Castle in picturesque Portland, Connecticut, Kasha and Mike Morris hosted an extraordinary event that would make a significant impact. The TANGO2 Benefit Banquet & Auction, held on November 5th, was a remarkable gathering with a heartfelt purpose - to raise funds for research on TANGO2 deficiency - [Welcoming Thomas Kim to Our Board of Directors](https://tango2research.org/welcoming-thomas-kim-to-our-board-of-directors/) - We have the honor and pleasure of welcoming a new member to our Board of Directors – Mr. Thomas Kim. Currently at the helm of EpiVario as President & CEO, Mr. Kim brings to the table a wealth of expertise in biotechnology, business leadership, and corporate law. He is an experienced biotech executive and corporate - [Don't miss Kasha Morris as a Panelist at CZI Science in Society 2023 Annual Meeting!](https://tango2research.org/dont-miss-kasha-morris-as-a-panelist-at-czi-science-in-society-2023-annual-meeting/) - Exciting news: the Chan Zuckerberg Initiative (CZI) Science in Society 2023 Annual Meeting: Advancing Patient-Driven Research in Rare Disease is coming up on September 21-23! This annual meeting seeks to unite physicians, researchers, patients, and other members of the Rare As One network to discuss the current and future focuses of patient-driven rare disease research. - [T2RF Selected for a $250,000 PCORI Engagement Award for Project on TANGO2](https://tango2research.org/t2rf-selected-for-a-250000-pcori-engagement-award-for-project-on-tango2/) - Exciting news! We are so pleased to announce that the TANGO2 Research Foundation has been approved for a $250,000 (USD) funding award through the Eugene Washington PCORI Awards program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The T2RF was one of several organizations awarded funding under a new Engagement Award opportunity focused on supporting - [Horizon Therapeutics awards the TANGO2 Research Foundation](https://tango2research.org/horizon-therapeutics-awards-the-tango2-research-foundation/) - Exciting news! For the second year in a row The TANGO2 Research Foundation has been selected to receive a #RAREis Global Advocate Grant from Horizon Therapeutics' #RAREis program. This year the #RAREis Global Advocate Grant was awarded to 50 nonprofit organizations that work to advocate for rare disease communities. This $5,000 (USD) award will help - [Mary Goetter](https://tango2research.org/mary-goetter/) - What is your involvement with the TANGO2 Research Foundation? Volunteer What is your connection to TANGO2? Why did you get involved? I attended the TANGO2 Fundraiser in East Hampton CT. I was impressed with the dedication of the small group of volunteers and how much they have accomplished in a short time. Tell - [Campaign Recap](https://tango2research.org/shine-a-light-2023-wrap-up/) - The TANGO2 Research Foundation recently wrapped up our third Shine a Light on TANGO2 fundraising campaign. This annual fundraising event supports The T2RF's mission of funding TANGO2 Deficiency Disorder (TDD) research. From February to June participants in the Shine a Light on TANGO2 campaign formed amazing fundraising teams and hosted creative fundraisers within their own - [Sophie Unger](https://tango2research.org/sophie-unger/) - What is your involvement with the TANGO2 Research Foundation? Volunteer What is your connection to TANGO2? Why did you get involved? I have been fascinated with genetics- both the science of how we inherit genes from our parents and how these genes can impact us- ever since I first studied this subject in my - [Genetic Counseling and TANGO2](https://tango2research.org/genetic-counseling-and-tango2/) - Who Are Genetic Counselors? Genetic counselors are healthcare professionals who educate patients about how their genes may affect them and their family members (Who Are Genetic Counselors?, n.d.). They inform patients about genetic testing options and what these tests can and cannot tell them, assist patients in comprehending genetic test results, and collaborate with patients - [GeneReviews® Update](https://tango2research.org/updates-to-tango2-deficiency-disorder-chapter-in-genereviews/) - Updates to the TANGO2 Deficiency Disorder Chapter in GeneReviews® Did you hear? The TANGO2 Deficiency Disorder chapter in GeneReviews® has been updated! This update includes new information about cardiac crises as one clinical feature of TDD and the importance of vitamin B in TDD management. GeneReviews® is an online database for rare genetic conditions - [Benjamin Mitchell](https://tango2research.org/benjamin-mitchell/) - We are delighted to feature Benjamin Mitchell in our Volunteer Spotlight for this month, as he has been an exceptional volunteer with our Foundation for the last six months and has made a significant impact. If you watched the series of YouTube videos he created for us during the holidays, you may remember him sharing - [Monoclonal Antibodies: Heard of It?](https://tango2research.org/monoclonal-antibodies-heard-of-it/) - Antibodies are blood proteins made by our immune systems that work to defend our bodies against antigens, which are foreign substances (Monoclonal Antibodies, 2021). Many antigens, such as bacteria and viruses, can make us sick; therefore, antibodies are an important factor in keeping us healthy (Definition of Antigen, n.d.). There are as many as 100 - [Lipids and TANGO2 Deficiency Disorder](https://tango2research.org/lipids-and-tango2-deficiency-disorder/) - Many researchers would agree a significant issue within the TANGO2 Deficiency Disorder community is lipid imbalances. But what does that mean? What are lipids, and why are they so important? Lipids, more commonly known as fats, play several crucial roles in the body (Green & Shallal, n.d.). Not only are they introduced into our bodies - [NEW ARTICLE ALERT](https://tango2research.org/new-article-alert/) - Latest news from Concordia University shows that Vitamin B5 may be the key to treating a dangerous rare genetic condition, according to new research Undergrad Paria Asadi found immediate benefits in fruit flies with TANGO2 deficiency disease. A simple vitamin could successfully treat a rare but potentially fatal genetic disease, according to new research - [Why Should I Participate in the TANGO2 Natural History Study?](https://tango2research.org/why-should-i-participate-in-the-tango2-natural-history-study/) - A natural history is the single best avenue to study traits of TANGO2 and how these traits progress over time With so little currently known about TANGO2, the collective data in a natural history study provides a resource to physicians that can potentially help treat children in crisis today A natural history study can help identify and prioritize areas - [TANGO2 Research Foundation Announces Funding of First Research Award](https://tango2research.org/tango2-research-foundation-announces-funding-of-first-research-award/) - The TANGO2 Research Foundation is excited to announce the funding of its first research award. The Foundation has committed $45,000 over a two-year period to help fund the cost of a Research Assistant dedicated to the TANGO2 Study being conducted at the Baylor College of Medicine/Texas Children’s Hospital in Houston. The project is being led under the direction of Doctors Seema - [Farewell Party in Italy Raises Money for Foundation](https://tango2research.org/farewell-party-in-italy-raises-money-for-foundation/) - Davide, a friend of Rashmi and Giorgio, organized his farewell party in support of TANGO2 research. Thanks to his idea and the participation of many close friends, he raised nearly $2K dollars for the Foundation. A big thanks to Davide and we wish him good luck with his new life in Sweden! - [TANGO2 Benefit Raises over $33K for Research](https://tango2research.org/tango2-benefit-raises-over-33k-for-research/) - The First Annual TANGO2 Benefit Banquet & Auction was held on October 28th at St. Clements Castle in Portland, CT to help Shine a Light on TANGO2. The event was hosted by Kasha and Mike Morris of East Hampton, CT whose son Ryan is affected by TANGO2 disease. The event raised over $33,000 to benefit the TANGO2 Research Foundation. There were over 175 - [TANGO2 Fundraiser in Turino, Italy a Great Success](https://tango2research.org/tango2-fundraiser-in-turino-italy-a-great-success/) - The Charles Dickens holiday classic, a Christmas Carol, was the backdrop for a TANGO2 Research Foundation fundraiser held on November 30, 2018 in Turin, Italy. The show was performed by Varallo’s Company, a local non-profit theater company. The event was organized by Giorgio and Rashmi Pochettino, whose children Edoardo and Carlotta are affected by TANGO2 disease. The event raised close to $6,000 (5.700€) - [ATTENTION TANGO2 Parents: Your participation in Baylor Study needed to help researchers learn more about the disease.](https://tango2research.org/attention-tango2-parents-your-participation-in-baylor-study-needed-to-help-researchers-learn-more-about-the-disease/) - When a new disease such as TANGO2 is discovered, there is a lot to learn. Many of the physicians caring for children with TANGO2 have never seen or managed this disease. The best way to learn about a new disease is to gather as much information as possible. As parents living with children with TANGO2, you - [Thank you to Italdesign, Baker Hughs, Apple and others for your support](https://tango2research.org/thank-you-to-italdesign-baker-hughs-apple-and-others-for-your-support/) - The TANGO2 Research Foundation would like to extend a special thanks to the following companies who have supported us through their matching gift programs. Their generous support has raised over $23K USD for the foundation thus far.** **Many companies offer similar matching gift programs and it’s a great way to leverage a gift you may want to - [Liefs voor Liam (Love for Liam) campaign raises money for Foundation](https://tango2research.org/liefs-voor-liam-love-for-liam-campaign-raises-money-for-foundation/) - Angelique and Jeffrey van der Haar of Delft, Netherlands wanted to come to the TANGO2 Family Conference in Houston this past June with their son Liam, who has TANGO2, and his sister Alyssa. At the suggestion of their friends Patricia and Nathalie, they started a fundraiser to help with the expenses of traveling as a family to the conference. In a March - [Announcing TANGO2 Research Call for Proposals – First Cycle of Grant Funding Now Open!](https://tango2research.org/announcing-tango2-research-call-for-proposals-first-cycle-of-grant-funding-now-open/) - The TANGO2 Research Foundation welcomes Researchers to submit a letter of Intent (LOI) for the first cycle of grant funding beginning in April 2020. The​ purpose of these grants is to advance the understanding of disease mechanism and treatment of TANGO2 disorder. ​Funding is available for 2-3 grants for the 2020-2021 year. Single-institution (single or - [Another Highly Successful TANGO2 Fundraiser in Turin, Italy!](https://tango2research.org/another-highly-successful-tango2-fundraiser-in-turin-italy/) - The novel “The Betrothed” (“I promessi sposi”), by the Italian writer Alessandro Manzoni, was the backdrop for a TANGO2 Research Foundation fundraiser held on November 9, 2019 in Turin, Italy. The show was performed by Varallo’s Company, a local non-profit theater company. The event was organized by Giorgio and Rashmi Pochettino, whose child Edoardo is affected by TANGO2 disease. The - [TANGO2 Banquet Raises over $40k for Foundation](https://tango2research.org/tango2-banquet-raises-over-40k-for-foundation/) - The Second Annual TANGO2 Benefit Banquet & Auction was held on November 10th at St. Clements Castle in Portland, CT to help Shine a Light on TANGO2. The event was hosted by Kasha and Mike Morris of East Hampton, CT whose son Ryan is affected by TANGO2 disease. The event raised over $40,000 to benefit the TANGO2 Research Foundation. There were - [End of Year Fundraising Initiatives in Italy](https://tango2research.org/end-of-year-fundraising-initiatives-in-italy/) - Christmas is the the season to give and give thanks. During the most recent season, there were several initiatives that took place in Turin to support the work of the TANGO2 Research Foundation! The events were coordinated by, or centered around Giorgio and Rashmi Pochettino, whose child Edoardo is affected by TANGO2 disease. The events raised $3,050 USD (2,750€) to benefit the Research - [Cycle One Grant Funding Awards 2020 – Project Details](https://tango2research.org/cycle-one-grant-funding-awards-2020-project-details/) - The TANGO2 Research Foundation is excited to share more details around our first cycle of grant funding that was awarded in April 2020! As expected, there has been a bit of a delay getting actual research underway due to COVID-19, but some labs have begun to open up and others are expected to in the near future. - [CHAN ZUCKERBERG INITIATIVE GRANT ACCELERATES TANGO2 RESEARCH FOUNDATION’S FUNDING OF CRITICAL RESEARCH AND HIRING OF EXECUTIVE DIRECTOR](https://tango2research.org/chan-zuckerberg-initiative-grant-accelerates-tango2-research-foundations-funding-of-critical-research-and-hiring-of-executive-director/) - MIDDLETOWN, Conn. (August 12, 2020) – Within six months of receiving funding from the Chan Zuckerberg Initiative (CZI), the TANGO2 Research Foundation (T2RF) is proud to announce funding of five new research projects and the hiring of their first Executive Director to accelerate work in finding treatments and a cure for a rare genetic disease called - [RARE DISEASE CONNECTION TANGO2 PODCAST: Everything to know about TANGO2, from the experts](https://tango2research.org/rare-disease-connection-tango2-podcast-everything-to-know-about-tango2-from-the-experts/) - We are pleased to share that Rare Disease Connection, a production of Aspect Health and raredisease.com, recently hosted a podcast with friends of our foundation! Sheena Byerly hosted Dr. Seema Lalani, Jayme Gilmore, and Lindsey Messerschmidt and featured their expertise and experiences with TANGO2 disease. TANGO2 disease has only been described in the last several years, so - [TANGO2 Research Project Update & Podcast](https://tango2research.org/tango2-research-project-update-podcast/) - In Spring of 2020, the TANGO2 Research Foundation granted Dr. Michael Sacher and Dr. Felix Distelmaier an award for their research proposal entitled Characterization Of Human TANGO2: From Biological Function To Therapeutic Strategies. Less than a year later, we are pleased to share that we already have research updates and progress. Dr. Sacher and his team have used fibroblasts from - [Shining a light on Oliver’s Awesome Advocates!](https://tango2research.org/shining-a-light-on-olivers-awesome-advocates/) - We are happy to highlight Team Oliver’s Awesome Advocates today! Oliver was diagnosed with TANGO2 in 2018 when he was 13. Oliver’s parents had already been searching for an answer to his ataxia, episodes and unexplained fatigue for more than 12 years at that point. While they were relieved to have a diagnosis, the poor - [East Hampton Has Heart](https://tango2research.org/east-hampton-has-heart/) - This month, the community of East Hampton, Connecticut held two fundraising events to support Team Ryan’s Shine a Light on TANGO2 campaign! The first event was at Po’s Rice and Spice in the historic district of East Hampton. Guests enjoyed delicious and innovative Thai dishes while supporting Ryan, an East Hampton native, who was born with TANGO2 disease. - [Shortening the Diagnostic Odyssey: Adding TANGO2 to Gene Panels](https://tango2research.org/shortening-the-diagnostic-odyssey-adding-tango2-to-gene-panels/) - TANGO2 disorder was first described in 2016, and based on estimated carrier frequencies of those pathogenic variants associated with TANGO2 disorder, the vast majority of patients with this disease remain undiagnosed. Unfortunately, rarely is a diagnosis made before a child’s first metabolic crisis. As these crises can be fatal, it is imperative that children with - [TANGO2 Disease Prevalence Study Findings](https://tango2research.org/tango2-disease-prevalence-study-findings/) - During the Summer, the TANGO2 Research Foundation’s leadership team met with the Broad Institute of MIT (Massachusetts Institute of Technology) and Harvard. Broad is an independent research institution dedicated to accelerating the pace at which the world conquers disease. They completed a TANGO2 disease prevalence study by curating, classifying and analyzing the various TANGO2 disease - [TANGO2 Benefit Raises $40,000 for TANGO2](https://tango2research.org/tango2-benefit-raises-40000-for-tango2/) - In November, the East Hampton community came together for Ryan Morris at the third Shine a Light on TANGO2 banquet. This year’s event raised $40,000 bringing the total raised for this event to $113,000 since it was first held in 2018. “I am proud and humbled by the generosity of the East Hampton community,” Kasha - [Amazon Smile Ending](https://tango2research.org/amazon-smile-ending/) - Amazon has donated $604.49 to the TANGO2 Research Foundation since we joined the AmazonSmile program in 2019. It might not be much to many, but we are grateful for every cent. Here’s part of their official statement: “To help charities that have been a part of the AmazonSmile program with this transition, we will be - [NOW ACCEPTING PATIENTS – TANGO2 Research Study at Baylor!](https://tango2research.org/now-accepting-patients-tango2-research-study-at-baylor/) - STUDY ENROLLMENT INFORMATION Families can contact Briana Bruckler at bxbruckl@texaschildrens.org for further information Researchers at Baylor College of Medicine in Houston, Texas are conducting research on TANGO2-related disease. The purpose of this study is to gather medical information to develop patient registry and to collect biological samples on children/parents for future studies. The researchers are requesting medical - [TANGO2 Study Announced - Baylor (BCM) IRB Protocol Approved!](https://tango2research.org/tango2-study-announced-baylor-bcm-irb-protocol-approved/) - UPDATE 6/7/2018 - NOW ACCEPTING PATIENTS Families can contact Dr. Christina Miyake at cymiyake@bcm.edu for further information We received word at this past Sunday’s TANGO2 Research Foundation board meeting that the Baylor IRB protocol for a TANGO2 Study has been approved! The official title of the IRB is Understanding the underlying mechanism of TANGO2 disease – establishing Biorepository and - [A Big Sister with a Big Heart](https://tango2research.org/a-big-sister-with-a-big-heart/) - Sammy is a 17 year old young man with TANGO2 disease. His big sister Laura has seen Sammy struggle all of his life with symptoms and limitations that made him different. But she treated him no differently than other siblings with the usual sibling rivalry of ups and downs laced with love. As she has - [A selfless act of kindness and generosity](https://tango2research.org/a-selfless-act-of-kindness-and-generosity/) - Kathie and Jeff Anderson of Apollo Beach, FL have never met Ryan Morris of East Hampton, CT yet they felt a special connection to him. Ryan’s Aunt Moe (Maureen) of Cranston, RI worked for Jeff at Blue Cross & Blue Shield of RI, and they’ve remained friends over the years. When Kathie and Jeff read - [TANGO2 published in GeneReviews](https://tango2research.org/tango2-published-in-genereviews/) - A special thanks to Seema R Lalani, MD, Brett Graham, MD, PhD, Lindsay Burrage, MD, PhD, Yi-Chen Lai, MD, Fernando Scaglia, MD, Christina Miyake, MD, MS, and Yaping Yang, PhD for taking the time and caring enough to publish TANGO2-Related Metabolic Encephalopathy and Arrhythmias in January of 2018. From GeneReviews GeneReviews, an international point-of-care resource for busy clinicians, - [Dr. Nishanthi Mathiyalagan is Presented with a $20,000 Research Grant from Uplifting Athletes & the TANGO2 Research Foundation](https://tango2research.org/dr-nishanthi-mathiyalagan-is-presented-with-a-20000-research-grant-from-uplifting-athletes-the-tango2-research-foundation/) - From The Gupta Laboratory in the Division of Genetics @ Brigham and Women’s Hospital, Dr. Nishanthi Mathiyalagan is Presented with a $20,000 Research Grant from Uplifting Athletes & the TANGO2 Research Foundation Uplifting Athletes, a nonprofit organization dedicated to serving the rare disease community, has announced that Dr. Mathiyalagan from the Gupta Laboratory @ Brigham - [Welcome to our new Research Engagement Director](https://tango2research.org/welcome-to-our-new-research-engagement-director/) - It is with pleasure that we announce the new Research Engagement Director of the TANGO2 Research Foundation. Deena Chisholm joins us with an extensive and all-encompassing public health, research and nonprofit background. Prior to joining the TANGO2 Research Foundation, Deena spent over a decade with large, complex health care systems and non-profit organizations developing and - [Theater Event in Italy](https://tango2research.org/theater-event-in-italy/) - We are so pleased to share the success of Giorgio and Rashmi Pochettino’s fundraiser in Italy! The Pochettinos, whose child Edoardo is affected by TANGO2 disease, raised $4,813 USD to benefit the work of the TANGO2 Research Foundation. Held by PiGreco theater company, they offered their talent for TANGO2 and performed a comedy skit entitled “Intrighi - [2022 T2 Christmas Ornament](https://tango2research.org/1550-2/) - Today’s blog post is written by a special guest, Matt Dort! Please read his message below. I am very excited to announce that Mack Laser Design is doing their first Christmas ornament fundraiser!! Mack Laser Design have chosen the TANGO2 Research Foundation as their charity of choice this year! My daughter Bria is 1 of - [Giving Tuesday Campaign Recap](https://tango2research.org/giving-tuesday-campaign-recap/) - This year, we had the most successful Giving Tuesday campaign we have ever had and we would like to THANK YOU for helping us raise over $16,000. These donations will go toward funding meritorious research projects for our third research grant cycle in 2023. TANGO2 Research Foundation-funded projects are searching for ways to end the - [Things to Know for the Upcoming Family Conference](https://tango2research.org/things-to-know-for-the-upcoming-family-conference/) - Here’s What You Need to Know About Our June Conference… The registration deadline is May 15th for the 2nd TANGO2 Family Conference June 26-28, 2022, in Orlando, Florida! You won’t want to miss the two and a half-day event, hosted by the TANGO2 Research Foundation. Our conference is designed to bring together the TANGO2 disease - [FRIENDS & FAMILY RALLY FOR RYAN](https://tango2research.org/friends-family-rally-for-ryan/) - This month, friends and family of Ryan Morris held a successful fundraiser to honor his journey living with TANGO2 disease. Ryan’s aunts, uncles, cousins and friends rallied together and gathered donations to set up a booth at the first area Flea Market of the season. Donations were collected from across eight different states that included - [Parents talk about TANGO2 with Ann Nyberg](https://tango2research.org/parents-talk-about-tango2-with-ann-nyberg/) - Mike and Kasha Morris of East Hampton CT recently spoke with Ann Nyberg of WTNH Channel 8 in New Haven CT about their son Ryan and TANGO2 related disease. Click here for full story. - [National Rare Disease Day – The Faces of TANGO2](https://tango2research.org/national-rare-disease-day-the-faces-of-tango2/) - In recognition of of National Rare Disease Day we would like to share The Faces of TANGO2 – a rare genetic disorder. A disease may be rare, but hope should not be. - [Australian Mom talks about her son Daniel](https://tango2research.org/australian-mom-talks-about-her-son-daniel/) - Meet Daniel Smith and his mom Tahlia from Eaton Australia on GWN7. Daniel is 5 years old and is diagnosed with TANGO2 – great job Mom and Son! Click on image below to view Tahlia’s interview. - [TANGO2 – It’s a small world after all….](https://tango2research.org/tango2-its-a-small-world-after-all/) - With fewer than 30 documented cases of TANGO2 worldwide it’s pretty amazing that two TANGO2 parents, Mike Morris from Connecticut and Giorgio Pochettino from Italy recently met in New York City to talk about TANGO2, their children and the future of the TANGO2 Research Foundation. Mike and Giorgio are both on the board of directors - [Spreading TANGO2 awareness in Lisbon](https://tango2research.org/spreading-tango2-awareness-in-lisbon/) - The TANGO2 Research Foundation would like to give a great big thanks to Dr. Renata Scalco for helping spread the word about TANGO2 Disease at the EAN Congress (European Academy of Neurology) in Lisbon Portugal this week. Dr. Scalco, who serves on our scientific advisory board, currently works at the MRC Centre for Neuromuscular Diseases, University College - [TANGO2 Research Foundation partners with NORD](https://tango2research.org/tango2-research-foundation-partners-with-nord/) - Earlier this month, the TANGO2 Research Foundation was admitted as a member to the National Organization for Rare Diseases. We’re very excited to partner with NORD and lean on them for guidance and advice as we continue to build out and grow our organization to learn more about TANGO2 disease and how to best treat it. - [TANGO2 In The News – Sammy’s Story](https://tango2research.org/tango2-in-the-news-sammys-story/) - ABC 13 in Houston, TX recently ran a feature highlighting Sammy, The Lopez Family and the groundbreaking work now underway at Baylor and Texas Children’s under the direction of Dr. Miyake and Dr. Lalani. Thank you to Sammy’s family for helping to tell the TANGO2 story and raise awareness for all, Drs. Miyake & Lalani and Tom Abrahams at ABC News - [Notes from a Rare Disease Mom – New Blog by TANGO2 Mom](https://tango2research.org/notes-from-a-rare-disease-mom-new-blog-by-tango2-mom/) - Veronica, Thea’s Mom, has started a blog sharing her and her family’s TANGO2 journey – click here to go to Notes from a Rare Disease Mom From Veronica: “In 2017, my then 2 year old daughter was diagnosed with a rare disease called Tango2 disease. Since then, we have been searching for answers and treatments. We have learned - [TANGO2 In The News – Baby Olivia’s Story](https://tango2research.org/tango2-in-the-news-baby-olivias-story/) - Two news outlets in British Columbia recently ran stories about Baby Olivia (McDonald), who was diagnosed with TANGO2 disease in July of this year. These two stories share the ongoing journey and struggles of Olivia and her parents, Chris and Gloria McDonald, as they and doctors battle this serious disease. Please take the time to - [Ellie’s Story](https://tango2research.org/ellies-story/) - Thank you so much to Laura and Blake Moore of Tahoka TX for sharing their daughter Ellie’s story with Juanell Jones of the Lynn County News and helping raise awareness for TANGO2. This is a wonderful article that touches upon the experiences, challenges, uncertainties and hope of one family raising a child affected by TANGO2 - [First Ever TANGO2 Conference Announced – June 19-20th 2019 – Houston TX](https://tango2research.org/first-ever-tango2-conference-announced-june-19-20th-2019-houston-tx/) - On Wednesday, June 19th through Thursday June 20th, patients, families, doctors and other professionals will meet in Houston TX to discuss TANGO2 disease and how to best move forward with research around this rare and serious genetic disorder. The conference is made possible by a generous grant from the Patient-Centered Outcomes Research Institute (PCORI) awarded to grantee Dr. - [T-Minus 1 Day – TANGO2 Family Conference – Houston 2019](https://tango2research.org/t-minus-1-day-tango2-family-conference-houston-2019/) - The very first TANGO2 Family Conference, hosted by the Baylor College of Medicine and the TANGO2 Research Foundation at The Westin Houston, Memorial City is about to get underway. Families, doctors and researchers are beginning to arrive for Tuesday night’s opening Welcome Reception. At this inaugural TANGO2 Family Conference, we are honored to welcome keynote speaker - [TANGO2 Family Conference 2019 – Huge Success](https://tango2research.org/tango2-family-conference-2019-huge-success/) - The very first TANGO2 Family Conference is now in the history books! Over 110 people – 22 families from 6 countries, almost 20 doctors and researchers and other professionals gathered in Houston last week to present research (and other topics related to TANGO2) and learn from one another. The conference was funded in large part by a grant from PCORI (Patient Centered Outcomes - [TANGO2 Research Foundation Is Hiring – Executive Director Position Now Open!](https://tango2research.org/tango2-research-foundation-is-hiring-executive-director-position-now-open/) - Executive Director Position (** NO LONGER ACCEPTING APPLICATIONS – THANK YOU**) The TANGO2 Research Foundation is seeking a dynamic and entrepreneurial-minded leader to serve as Executive Director. This is an exciting time to join our foundation to help create and cultivate an organization that makes a real difference and transforms the lives of TANGO2 patients and families. The mission of the TANGO2 - [TANGO2 Research Foundation Awarded Grant from the Chan Zuckerberg Initiative to Fight Rare Disease](https://tango2research.org/tango2-research-foundation-awarded-grant-from-the-chan-zuckerberg-initiative-to-fight-rare-disease/) - TANGO2 Research Foundation Awarded Grant from the Chan Zuckerberg Initiative to Fight Rare Disease Part of $13.5 Million from the Chan Zuckerberg Initiative to Drive Progress Against Rare Diseases MIDDLETOWN, Conn. (Feb. 3, 2020) — The TANGO2 Research Foundation is excited to announce it has received $450,000 in funding from the Chan Zuckerberg Initiative (CZI) to - [Summer 2020 Newsletter!](https://tango2research.org/summer-2020-newsletter/) - Our Summer 2020 Newsletter is now available! Please click image below to learn more about all the exciting things going on at the TANGO2 Research Foundation as we continue our search for answers. Be sure to Subscribe to Our newsletter to receive it in your inbox. - [Welcome to our new Executive Director](https://tango2research.org/welcome-to-our-new-executive-director/) - It is with pleasure that we announce the new Executive Director of the Tango2 Research Foundation. Ann Geffen joins us with an extensive and all-encompassing nonprofit background. Geffen came to the Tango2 Research Foundation from March of Dimes, where she was a National Account Manager and previously an Executive Director. There, she managed several accounts, - [Meet Agathe De Miniac, Author of ‘Tango2’](https://tango2research.org/meet-agathe-de-miniac-author-of-tango2/) - Our foundation interviewed Agathe De Miniac for our blog this month. Agathe wrote a book about her family being shaken up by the arrival of three disabled children. We are pleased to share this interview in both English and French below. Click for more information or to purchase the book. What are the names and ages of your - [Teaming up with Solace Nutrition to help increase the quality of life for those with TANGO2 Disease](https://tango2research.org/teaming-up-with-solace-nutrition-to-help-increase-the-quality-of-life-for-those-with-tango2-disease/) - Solace Nutrition has teamed up with the TANGO2 Research Foundation to help support our mission of leading the way in finding a cure for TANGO2 related disease. Solace Nutrition seeks to develop medical nutritional products with a strong scientific background that target diseases which can be better managed through nutrition and thus promote quality of life. - [Rare Disease Day Special Highlight: Living with a Unicorn](https://tango2research.org/rare-disease-day-special-highlight-living-with-a-unicorn/) - This Rare Disease Day, the TANGO2 Research Foundation highlights “Living with a Unicorn” – a blog by Gloria McDonald, Olivia’s mom. Gloria talks about Olivia, her diagnosis of TANGO2 disease, how their life changed, what they’ve learned along the way, and more. Gloria writes, “We hope that you will feel encouraged and inspired by Olivia’s - [Shining a Light on McKenna Messerschmidt](https://tango2research.org/shining-a-light-on-mckenna-messerschmidt/) - If you were on our Shine a Light on TANGO2 kickoff event back in February, you met Lindsey and Brad Messerschmidt! Lindsey and Brad are parents to three children diagnosed with TANGO2 disease. They live in Spokane, Washington. Their first son Jackson passed away at the age of three and at the time, he did not have a - [Meet Our New Fundraising Committee Chair](https://tango2research.org/meet-our-new-fundraising-committee-chair/) - We are pleased to announce the transition of leadership for our Fundraising Committee. Our outgoing chair, Kara Dort, has accepted the role of Board Treasurer after successfully leading the fundraising committee and campaign to exceed our goal. Take a moment and meet Sam, our new Fundraising Committee Chair. Get to know Sam and read why she - [Shine a Light on TANGO2 Celebrate & Learn - In case you missed it!](https://tango2research.org/shine-a-light-on-tango2-celebrate-learn-in-case-you-missed-it/) - On June 26th, our Foundation had a successful virtual event celebrating on TANGO2 community. We celebrated our amazing team captains, participants and donors for surpassing our fundraising goal. We also heard from one of our research grantees, Dr. Michael Sacher, and launched our CoRDS TANGO2 patient registry. Click to watch the recording here and view all - [FAMILY SPOTLIGHT: Meet the Longmans](https://tango2research.org/family-spotlight-meet-the-longmans/) - The families of our TANGO2 warriors have been an immense source of support and outreach for their warriors and our cause. Just this week, David Longman organized a POKER FOR TANGO2 fundraising event to honor his son’s, Erling, journey living with TANGO2 disease as part of the Shine a Light on TANGO2 campaign. Around 32 - [Meet Our Newest Board Member](https://tango2research.org/meet-our-newest-board-member-2/) - We are pleased to introduce Dr. Michael Sacher as our newest board member! Read below to learn how he connected with our community. Also, catch Dr. Sacher as one of our featured speaker during the TANGO2 Research Symposium on November 6th! Please tell us your role at the TANGO2 Research Foundation? I am a volunteer and - [First-Ever Chan Zuckerberg Initiative Rare As One Northeast Gathering](https://tango2research.org/first-ever-chan-zuckerberg-initiative-rare-as-one-northeast-gathering/) - Recently, Kasha and Mike Morris, Founders of the TANGO2 Research Foundation met with other Chan Zuckerberg Initiative (CZI) Rare As One Project patient-led organizations from the Northeast area. The gathering was a wonderful opportunity to get to know the other rare disease organizations better, share common challenges and learn from one another’s successes. Our Foundation is one - [Meet Our Newest Board Member](https://tango2research.org/meet-our-newest-board-member/) - We are pleased to introduce David Longman as our newest board member! Read below to learn how he connected with our community. What is your involvement with the TANGO2 Research Foundation? I am a member of Research and Outreach Committees, a Regional Coordinator and, most recently became a board member. How long have you been - [This Monday, February 28th is Rare Disease Day](https://tango2research.org/this-monday-february-28th-is-rare-disease-day/) - Rare definition: adjective, seldom occurring or found. When considering that there are less than 200 individuals world-wide that have been medically diagnosed with TANGO2 disease, it might feel like we accurately fall within this definition. However, TANGO2 disease is one among 7,000 rare diseases globally. In fact, over 300 million people are impacted by rare - [Chan Zuckerberg Initiative Awards TANGO2 Research Foundation $150,000](https://tango2research.org/chan-zuckerberg-initiative-awards-tango2-research-foundation-150000/) - With great excitement we share that the Chan Zuckerberg Initiative (CZI) recently awarded the TANGO2 Research Foundation an additional $150,000 in funds to continue our work to find treatments and a cure. With this funding also comes the opportunity to continue with the Rare As One Network for another year. We graciously thank CZI for - [Our Foundation is Hiring a Research Engagement Director!](https://tango2research.org/our-foundation-is-hiring-a-research-engagement-director/) - The TANGO2 Research Foundation (T2RF) is seeking a dynamic leader to serve as the Research Engagement Director. This is an exciting time to join our foundation to help create and cultivate an organization that makes a real difference and transforms the lives of patients living with TANGO2 disease, a rare disease discovered in 2016. The mission - [Our Foundation’s Story on Shining a Light on TANGO2](https://tango2research.org/our-foundations-story-on-shining-a-light-on-tango2/) - The initial diagnosis of TANGO2-related disorder in a loved one brings a family a variety of emotions from shock, to fear to uncertainty. Being a newly discovered rare disease, families of those recently diagnosed can struggle with finding information, resources and community. When Tyson and Veronica’s daughter, Thea, was diagnosed at age 2 in 2016 - [2022 TANGO2 Family Conference Recap](https://tango2research.org/2022-tango2-family-conference-recap/) - Three Days in Orlando: Five Great Moments from the 2022 TANGO2 Family Conference! The 2022 TANGO2 Family Conference recently wrapped up, and we’d say it was a huge success! From exciting educational sessions to groundbreaking new info, there was a lot to take in. If you missed something, don’t worry! We’re going to recap - [Meet Board Member Kara Cameron](https://tango2research.org/meet-board-member-kara-cameron/) - We are pleased to introduce long-time TANGO2 Research Foundation board member, Kara Cameron! Kara serves as our board’s Treasurer and is also a member of the Research Committee, Executive Committee and Fundraising Committee. We asked Kara about her experience with the organization. Read below to learn more about this truly amazing volunteer! What is your ## Pages - [HOME](https://tango2research.org/) - IMPROVING THE LIVES OF THOSE AFFECTED BY TANGO2 DEFICIENCY DISORDER Virtual streaming tickets are now available for our 2026 TANGO2 Family Conference on June 28th-30th. Click here to learn more. OUR MISSION The TANGO2 Research Foundation’s mission is to lead the way in finding a cure for TANGO2 deficiency disorder. OUR VISION Accelerate research and - [VOLUNTEER](https://tango2research.org/volunteer/) - VOLUNTEER Outreach Committee Chair – Robin Mitchell VIew Description, Role and Responsibilities Fundraising Committee Chair – Sam Gregoire VIew Description, Role and Responsibilities Early Diagnostic & Detection Committee Chair – Farah Ladha VIew Description, Role and Responsibilities Research Committee Chair – Giorgio Pochettino VIew Description, Role and Responsibilities OUTREACH COMMITTEE AMY CLAY DAVID LONGMAN BLAKE - [COMMITTEES](https://tango2research.org/about-us/committees/) - COMMITTEES Robin MitchellOutreach Committee Chair Sam GregoireFundraising Committee Chair Giorgio PochettinoResearch Committee Chair Farah LadhaEarly Detection & Diagnosis Committee Chair EXECUTIVE COMMITTEE BLAKE MOORE GIORGIO POCHETTINO KARA CAMERON KASHA MORRIS MIKE MORRIS OUTREACH COMMITTEE AMY CLAY BLAKE MOORE VERONICA JONES CYNTHIA GARCIA SANDI COHEN LISA WILSON CARMEL MURPHY FUNDRAISING COMMITTEE JOANNE BARMASSE AMY CLAY KARA - [TDD RESEARCH PATHWAYS GRANT](https://tango2research.org/research/tdd-research-pathways-grant/) - TDD RESEARCH PATHWAYS GRANT The TDD Research Pathways Grant supports early-career investigators, including undergraduate and graduate students, postdoctoral fellows, residents, and clinical or research fellows, who are dedicated to advancing TANGO2 Deficiency Disorder (TDD) research and improving TANGO2 warrior outcomes. This program provides funding for pilot studies & innovative research projects encouraging participation in TDD-focused - [RESEARCH FUNDING PORTFOLIO](https://tango2research.org/research/research-funding-portfolio/) - RESEARCH FUNDING PORTFOLIO The TANGO2 Research Foundation supports researchers and scientists at various stages of their careers in order to advance the understanding of TANGO2-deficiency disorder and basic disease mechanisms, identify innovative approaches to therapeutics, and develop strategies that support individuals living with TANGO2 deficiency disorder in carrying out their activities of daily living. For - [SUPPORT IN YOUR REGION](https://tango2research.org/for-families/support-in-your-region/) - SUPPORT IN YOUR REGION The Family Regional Coordinator Program was established as a way to help build positive and lasting relationships between families who share similar journeys and live in the same geographical region. The Family Regional Coordinator program is made up of family caregivers who have experienced the highs and lows of living with - [PRESS KIT](https://tango2research.org/about-us/press-kit/) - PRESS KIT ABOUT THE TANGO2 RESEARCH FOUNDATION Our Mission Our mission is to lead the way in finding a cure for TANGO2 deficiency disorder. We will do this by helping to fund, coordinate and guide scientific research that leads to a better understanding of how TANGO2 mutations affect people at the most basic cellular and - [GRANT OPPORTUNITIES](https://tango2research.org/research/grant-opportunities/) - GRANT OPPORTUNITIES T2RF Grant Opportunities For close to a decade, The TANGO2 Research Foundation (T2RF) has been successful in carrying out its mission to fund innovative basic, clinical and translational research conducted by talented investigators worldwide. T2RF has awarded close to $1.2 million since its inception, funding projects that have the potential to advance the - [GUIDELINES & ER PROTOCOL](https://tango2research.org/for-families/guidelines-er-protocol/) - GUIDELINES & ER PROTOCOL PARENT AND CAREGIVER GUIDEBOOK 1 1 To receive a guidebook, fill out the form below. We currently have the TDD Parent and Caregiver Guidebook in English, Spanish, French, Italian, Arabic, and Portuguese. Click to Receive Full Guidebook TANGO2 MENTAL HEALTH TOOLKIT Click to View FOUNDER’S B-VITAMIN - [SIGNS & SYMPTOMS](https://tango2research.org/about-tango2/signs-symptoms/) - SIGNS & SYMPTOMS Primary Symptoms Metabolic Crisis May include hypoglycemia, hyperlactacidemia, and mild hyperammonemia. Urine organic acids can show marked ketoacidosis and lactic acidosis. Acylcarnitine profiles may show elevated C14:1 in some individuals and elevated C10 in others. Metabolic abnormalities typically normalize after the metabolic crisis, although some individuals continue to have mildly elevated Creatine phosphokinase (CPK) levels. Rhabdomyolysis Majority of individuals present - [Annual Report](https://tango2research.org/annual-report/) - 2025 Annual Report Leading the way in finding a cure for TANGO2 deficiency disorder. Available Now A WORD FROM OUR LEADERSHIP “We’re very optimistic that through our collective efforts, 2025 will bring new scientific understanding to TDD, expand on the amazing B-vitamin story, and continue down the path of helping all TDD patients live their - [2026 Full Conference Program](https://tango2research.org/2026-conference-full-conference-program/) - HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE SPONSORSHIP SPONSORSHIP INFORMATION VIEW SPONSORSHIP PACKAGE REGISTER ATTENDEE RESOURCES SIGN UP FOR CHILD/YOUNG ADULT CARE SERVICES APPLY FOR TRAVEL GRANT CONFERENCE AND RESORT MAP MERCHANDISE FREQUENTLY ASKED QUESTIONS POSTER ABSTRACTS AWARDS GET INVOLVED Visit TANGO2RESEARCH.ORG HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE - [OUR VISION](https://tango2research.org/about-us/our-impact/) - OUR VISION Accelerate research and therapy discovery Advocate and promote awareness Support and connect families Drive accurate and early diagnosis We have over 90 patients enrolled in the Natural History Study allowing us to collect information to better understand TANGO2 deficiency disorder. We have over 50 videos on our youtube channel to help educate and - [2026 Conference](https://tango2research.org/2026-conference/) - HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE SPONSORSHIP SPONSORSHIP INFORMATION VIEW SPONSORSHIP PACKAGE REGISTER ATTENDEE RESOURCES SIGN UP FOR CHILD/YOUNG ADULT CARE SERVICES APPLY FOR TRAVEL GRANT CONFERENCE AND RESORT MAP MERCHANDISE FREQUENTLY ASKED QUESTIONS POSTER ABSTRACTS AWARDS GET INVOLVED Visit TANGO2RESEARCH.ORG HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE - [2026 Conference Sponsorship](https://tango2research.org/2026-conference-sponsorship/) - HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE SPONSORSHIP SPONSORSHIP INFORMATION VIEW SPONSORSHIP PACKAGE REGISTER ATTENDEE RESOURCES SIGN UP FOR CHILD/YOUNG ADULT CARE SERVICES APPLY FOR TRAVEL GRANT CONFERENCE AND RESORT MAP MERCHANDISE FREQUENTLY ASKED QUESTIONS POSTER ABSTRACTS AWARDS GET INVOLVED Visit TANGO2RESEARCH.ORG HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE - [OUR SUPPORTERS](https://tango2research.org/about-us/our-supporters/) - OUR SUPPORTERS Each sponsor creates an opportunity for the Foundation to fund research, find treatments and support our families. To collaborate with our Foundation, please contact Ann Geffen at ann.geffen@tango2resesarch.org We are proud to have the support of these leading organizations committed to advancing our mission. SPONSORS SUPPORTERS & COLLABORATIONS - [2026 Conference Activites Schedule](https://tango2research.org/2026-conference-activites-schedule/) - HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE SPONSORSHIP SPONSORSHIP INFORMATION VIEW SPONSORSHIP PACKAGE REGISTER ATTENDEE RESOURCES SIGN UP FOR CHILD/YOUNG ADULT CARE SERVICES APPLY FOR TRAVEL GRANT CONFERENCE AND RESORT MAP MERCHANDISE FREQUENTLY ASKED QUESTIONS POSTER ABSTRACTS AWARDS GET INVOLVED Visit TANGO2RESEARCH.ORG HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE - [PUBLICATIONS](https://tango2research.org/research/publications/) - PUBLICATIONS Tips For Reading Scientific Papers 2026 Puyana Rodríguez, J. M., Valverde Mata, N., Juliá Palacios, N., Real Terrón, R., Sardina González, M. D., & Cáceres Marzal, C. (2026). Pantothenic acid and folate in TANGO2 deficiency: a sibling experience. Pediatric Neurology. Sandkuhler, S. E., Youngs, K. S., Gottipalli, O., Owlett, L. D., Bandora, M. - [2026 Conference Agenda](https://tango2research.org/2026-conference-agenda/) - HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE SPONSORSHIP SPONSORSHIP INFORMATION VIEW SPONSORSHIP PACKAGE REGISTER ATTENDEE RESOURCES SIGN UP FOR CHILD/YOUNG ADULT CARE SERVICES APPLY FOR TRAVEL GRANT CONFERENCE AND RESORT MAP MERCHANDISE FREQUENTLY ASKED QUESTIONS POSTER ABSTRACTS AWARDS GET INVOLVED Visit TANGO2RESEARCH.ORG HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE - [GRANT](https://tango2research.org/research/grants/) - CYCLE GRANTS Grant Cycle Six The TANGO2 Research Foundation (T2RF) research grants provides essential funding for seed or pilot research projects, fostering the exploration of groundbreaking research concepts. These awards support initial testing phases, allowing researchers to embark on smaller-scale endeavors. The emphasis lies in evaluating feasibility and refining methodologies, shaping the trajectory of potential larger-scale - [Travel Grant](https://tango2research.org/travel-grant/) - TRAVEL GRANTS The TDD Research Pathways Grant supports early-career investigators, including undergraduate and graduate students, postdoctoral fellows, residents, and clinical or research fellows, who are dedicated to advancing TANGO2 Deficiency Disorder (TDD) research and improving TANGO2 warrior outcomes. This program provides funding for pilot studies & innovative research projects encouraging participation in TDD-focused initiatives while - [SAMMY'S ANGELS](https://tango2research.org/for-families/sammys-angels/) - SAMMY’S ANGELS To add your loved one’s story, please complete this form View Form Welcome to Sammy’s Angels wall. This is a place where we honor and remember all TANGO2 deficiency disorder children and adults who have passed away. We call this wall Sammy’s Angels in memory of Sammy Lopez, who gained his angel wings - [2026 Conference Registration](https://tango2research.org/2026-conference-registration/) - HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE SPONSORSHIP SPONSORSHIP INFORMATION VIEW SPONSORSHIP PACKAGE REGISTER ATTENDEE RESOURCES SIGN UP FOR CHILD/YOUNG ADULT CARE SERVICES APPLY FOR TRAVEL GRANT CONFERENCE AND RESORT MAP MERCHANDISE FREQUENTLY ASKED QUESTIONS POSTER ABSTRACTS AWARDS GET INVOLVED Visit TANGO2RESEARCH.ORG HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE - [LEADERSHIP & BOARDS](https://tango2research.org/about-us/leadership-boards/) - OUR LEADERSHIP AND BOARDS BOARD OF DIRECTORS Mike MorrisPresident Blake MooreVice President Kara CameronTreasurer Kasha MorrisSecretary TANGO2 Research Foundation requires 100% board giving from all current board members. We are proud to share that each of our board members meets or exceeds this expectation through both personal contributions and gifts from their extended families, businesses, - [2026 Conference and Resort Map](https://tango2research.org/2026-conference-and-resort-map/) - HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE SPONSORSHIP SPONSORSHIP INFORMATION VIEW SPONSORSHIP PACKAGE REGISTER ATTENDEE RESOURCES SIGN UP FOR CHILD/YOUNG ADULT CARE SERVICES APPLY FOR TRAVEL GRANT CONFERENCE AND RESORT MAP MERCHANDISE FREQUENTLY ASKED QUESTIONS POSTER ABSTRACTS AWARDS GET INVOLVED Visit TANGO2RESEARCH.ORG HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE - [OUR STORIES](https://tango2research.org/about-us/our-stories/) - OUR STORIES Click Any Image to View Story Connecticut, USARyan Our personal journey began back in 2002 when our son Ryan, who had been developing normally until his first birthday, began struggling with with episodic bouts of muscle weakness, paroxysmal torticollis and other neurological and muscle related issues. Developmental milestones that he had been previously - [EVENTS](https://tango2research.org/events/) - EVENTS TANGO2 FAMILY CONFERENCE Sunday, June 28-30, 2026 The TANGO2 Research Foundation is pleased to welcome families, clinicians, researchers, and partners to the 4th TANGO2 Family Conference, taking place in Orlando, Florida at Disney’s Coronado Springs Resort Sunday, June 28th through Tuesday, June 30th, 2026! This biennial conference brings the global TANGO2 community together to - [Monthly Donor](https://tango2research.org/monthly-donor/) - BECOME A OUR KIDS NEED HEROES. SHOW YOUR SUPPORT TODAY. Right now, someone you love could use your support. We need your monthly support now – more than ever – to help fund lifesaving research and support families. Help create the breakthroughs that will help save the ones you love! All monthly gifts are eligible - [2026 Conference Poster Abstracts](https://tango2research.org/2026-conference-poster-abstracts/) - HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE SPONSORSHIP SPONSORSHIP INFORMATION VIEW SPONSORSHIP PACKAGE REGISTER ATTENDEE RESOURCES SIGN UP FOR CHILD/YOUNG ADULT CARE SERVICES APPLY FOR TRAVEL GRANT CONFERENCE AND RESORT MAP MERCHANDISE FREQUENTLY ASKED QUESTIONS POSTER ABSTRACTS AWARDS GET INVOLVED Visit TANGO2RESEARCH.ORG HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE - [JOIN OUR EMAIL LIST](https://tango2research.org/join-our-email-list/) - JOIN OUR EMAIL LIST Join our mailing list to stay informed about upcoming events, TANGO2 Research Foundation news, and the latest TANGO2 research updates. Join Our Email List - [2026 Conference Apply for a Travel Grant](https://tango2research.org/2026-conference-apply-for-travel-grant/) - HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE SPONSORSHIP SPONSORSHIP INFORMATION VIEW SPONSORSHIP PACKAGE REGISTER ATTENDEE RESOURCES SIGN UP FOR CHILD/YOUNG ADULT CARE SERVICES APPLY FOR TRAVEL GRANT CONFERENCE AND RESORT MAP MERCHANDISE FREQUENTLY ASKED QUESTIONS POSTER ABSTRACTS AWARDS GET INVOLVED Visit TANGO2RESEARCH.ORG HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE - [OUR CONFERENCES & SYMPOSIUM](https://tango2research.org/about-us/our-conferences-symposium/) - OUR CONFERENCES AND SYMPOSIUMS TANGO2 Family Conference in Orlando June 28-30, 2026 Click Here to View the 2026 Conference Site TANGO2 Family Conference in Orlando June 23-25, 2024 Click Here to View the Conference VideosClick Here to View the Conference ProgramClick Here to View Conference Proceedings TANGO2 Research Symposium October 27, 2023 (Virtual) Click Here - [2026 Conference Get Involved](https://tango2research.org/2026-conference-get-involved/) - HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE SPONSORSHIP SPONSORSHIP INFORMATION VIEW SPONSORSHIP PACKAGE REGISTER ATTENDEE RESOURCES SIGN UP FOR CHILD/YOUNG ADULT CARE SERVICES APPLY FOR TRAVEL GRANT CONFERENCE AND RESORT MAP MERCHANDISE FREQUENTLY ASKED QUESTIONS POSTER ABSTRACTS AWARDS GET INVOLVED Visit TANGO2RESEARCH.ORG HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE - [2026 Conference Awards](https://tango2research.org/2026-conference-awards/) - HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE SPONSORSHIP SPONSORSHIP INFORMATION VIEW SPONSORSHIP PACKAGE REGISTER ATTENDEE RESOURCES SIGN UP FOR CHILD/YOUNG ADULT CARE SERVICES APPLY FOR TRAVEL GRANT CONFERENCE AND RESORT MAP MERCHANDISE FREQUENTLY ASKED QUESTIONS POSTER ABSTRACTS AWARDS GET INVOLVED Visit TANGO2RESEARCH.ORG HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE - [2026 Conference FAQs](https://tango2research.org/2026-conference-faqs/) - HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE SPONSORSHIP SPONSORSHIP INFORMATION VIEW SPONSORSHIP PACKAGE REGISTER ATTENDEE RESOURCES SIGN UP FOR CHILD/YOUNG ADULT CARE SERVICES APPLY FOR TRAVEL GRANT CONFERENCE AND RESORT MAP MERCHANDISE FREQUENTLY ASKED QUESTIONS POSTER ABSTRACTS AWARDS GET INVOLVED Visit TANGO2RESEARCH.ORG HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE - [2026 Conference Merchandise](https://tango2research.org/2026-conference-merchandise/) - HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE SPONSORSHIP SPONSORSHIP INFORMATION VIEW SPONSORSHIP PACKAGE REGISTER ATTENDEE RESOURCES SIGN UP FOR CHILD/YOUNG ADULT CARE SERVICES APPLY FOR TRAVEL GRANT CONFERENCE AND RESORT MAP MERCHANDISE FREQUENTLY ASKED QUESTIONS POSTER ABSTRACTS AWARDS GET INVOLVED Visit TANGO2RESEARCH.ORG HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE - [2026 Conference Sign Up for Our TANGO2 Together Camp](https://tango2research.org/2026-conference-sign-up-for-childcare-services/) - HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE SPONSORSHIP SPONSORSHIP INFORMATION VIEW SPONSORSHIP PACKAGE REGISTER ATTENDEE RESOURCES SIGN UP FOR CHILD/YOUNG ADULT CARE SERVICES APPLY FOR TRAVEL GRANT CONFERENCE AND RESORT MAP MERCHANDISE FREQUENTLY ASKED QUESTIONS POSTER ABSTRACTS AWARDS GET INVOLVED Visit TANGO2RESEARCH.ORG HOME PROGRAM FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE - [Innovation Fund](https://tango2research.org/innovationfund/) - The TANGO2 Innovation Fund celebrates the extraordinary clinical and scientific professionals who are advancing research and providing compassionate care for those affected by TANGO2 deficiency disorder. The TANGO2 Innovation Fund Campaign funds research initiatives that drive the latest breakthroughs and treatments for TANGO2 deficiency - [Summit](https://tango2research.org/summit/) - DECEMBER 14-15, 2025 HOUSTON MARRIOTT MEDICAL CENTER/MUSEUM DISTRICT 6580 Fannin Street, 1730 Dryden Rd, Houston, TX 77030 Register Now Book Accommodations Request Travel Stipend Please note the following: The TANGO2 Research Foundation will cover the cost of hotel accommodations booked through the link via this website; Innovation Summit participants just need to provide a credit - [MERCHANDISE](https://tango2research.org/about-us/supporters/) - MERCHANDISE Shop our Products on Bonfire SHOP OUR SUPPORTERS Shop our partners, and a percentage of the proceeds will be donated to the TANGO2 Research Foundation! Use code FUNDRAISETANGO2 for 20% off. - [TANGO2 DEFICIENCY DISORDER](https://tango2research.org/about-tango2/tango2-deficiency-disorder/) - TANGO2 & TANGO2 DEFICIENCY DISORDER What is TANGO2?What is TANGO2 deficiency disorder?CausesSigns and SymptomsDiagnosisTreatment What is TANGO2? TANGO2 itself is a protein coding gene on chromosome 22 (22q11.21). This gene belongs to the Transport and Golgi organization (TANGO) family. Genes provide instructions for creating proteins that play a critical role in many functions of the - [2025 Symposium](https://tango2research.org/2025-symposium/) - FRIDAY, OCTOBER 24TH AT 9:00 AM – 1:00 PM EASTERN TIME ON ZOOM Register View Program SHARING THE LATEST TANGO2 RESEARCH & BROADENING OUR RESEARCH NETWORK Led by leading TANGO2 deficiency disorder researchers and healthcare professionals, this symposium provides a program of information-rich sessions designed for researchers, healthcare professionals, caregivers, and advocates of individuals affected - [TANGO2 NATURAL HISTORY STUDY](https://tango2research.org/research/nhs/) - TANGO2 NATURAL HISTORY STUDY PARTICIPATION IS CRITICALSupported by the TANGO2 Research Foundation, this study aims to enhance our understanding of TANGO2 deficiency disorder progression over time, offer opportunities to improve clinical care, establish comprehensive treatment guidelines and ultimately find a cure.Click Here to Get Started! Study Contacts: Dr. Sergio Espinosa-Alvarez Email: tango2.research@bcm.edu Document/Records Fax Number: 713-798-5950 Click to - [Digital Content](https://tango2research.org/digital-content/) - DIGITAL CONTENT The TANGO2 Research Foundation is proud to offer many digital resources for our community. Introduction to TANGO2 Deficiency Disorder Genetics Series Genetics can feel confusing, especially after a TANGO2 Deficiency Disorder (TDD) diagnosis. This short video series is made for families, breaking down TDD genetics in simple, everyday language to help you better - [Diagnosing TDD & Clinical Care Guidelines](https://tango2research.org/diagnosing-tdd-clinical-care-guidelines/) - DIAGNOSING TDD & CLINICAL CARE GUIDELINES EMERGENCY PROTOCOL LETTER Download DIAGNOSING TDD Download - [FOR HEALTHCARE PROFESSIONALS New](https://tango2research.org/for-healthcare-professionals/) - FOR HEALTHCARE PROFESSIONALS Biorepository Cellular Models Animal/Organoids Model Research Resources BIOREPOSITORY In collaboration with Baylor College of Medicine, the TANGO2 Research Foundation has actively supported the establishment of a TDD Biorepository. This collaborative initiative underscores our commitment to advancing research by providing a centralized resource for the collection and preservation of valuable biological specimens relevant - [RESEARCH ROAD MAP](https://tango2research.org/research/research-road-map/) - RESEARCH ROAD MAP Research is at the epicenter of finding a cure. We envision our foundation as the vehicle committed to driving the research forward; funding grants, enhancing communication and coordinating efforts among those invested in conquering TANGO2 deficiency disorder. This year, we invested $193,500 in TDD research around the world bringing the total investment - [FOR HEALTHCARE PROFESSIONALS - old](https://tango2research.org/for-healthcare-professionals-old/) - FOR HEALTHCARE PROFESSIONALS Natural History Study View Guidelines View Learning Network View Publications View Grant Opportunities View Symptom Examples View - [FAMILY RESOURCES](https://tango2research.org/for-families/family-resources/) - FAMILY RESOURCES EMERGENCY PROTOCOL LETTER View GLOSSARY OF TERMS View NATURAL HISTORY STUDY View TDD Fact Sheet Download GUIDEBOOK & GUIDELINES View DIGITAL CONTENT View SUPPORT IN YOUR REGION View TANGO2 DISEASE SUPPORT GROUP View ANNUAL REPORTS View PUBLICATIONS View CONFERENCES & SYMPOSIUMS View EDUCATOR’S GUIDE View - [FUNDRAISING](https://tango2research.org/fundraising/) - FUNDRAISING The TANGO2 Research Foundation relies on fundraising and donations to fund our research and work. Our families and supporters have come up with creative and meaningful ways to support the critical work of our Foundation. Hosting your own fundraiser lets you tap into your talents and interests to inspire others to get in on - [Celebrate for a Cause](https://tango2research.org/birthday/) - CELEBRATE FOR A CAUSE Give the Ultimate Gift! Make a difference in the lives of children and families impacted by TANGO2 deficiency disorder around the world. Donate today to make an impact! Celebrate a special day by supporting a special cause Every dollar donated brings us closer to a cure. Your donation will help: Fund - [CONTACT US](https://tango2research.org/contact-us/) - CONTACT US We’re here to help! If you have a question or would like information, please email us at info@tango2research.org. Please be specific to better help us get your request to the right person. TANGO2 Research Foundation PO Box 43 Hadlyme, CT 06439 The TANGO2 Research Foundation is registered as a not-for-profit corporation (EIN: 82-3667557) under - [DONATE](https://tango2research.org/donate/) - DONATE “Our family strongly supports this foundation, as the work being done is life-changing. We are now working for a future where Bec can continue to lead a great life, and families affected by TANGO2 disease have hope for a bright and healthy future.” — Sandi and Dave Cohen When Bec Cohen and her family - [Research Learning Network](https://tango2research.org/research-learning-network/) - RESEARCH LEARNING NETWORK Our free TANGO2 Deficiency Disorder Research Learning Network (TDD RLN) is your portal to join forces with a worldwide network of researchers, clinicians, and families—all united in advancing TANGO2 research. Our Learning Network transcends traditional forums. It’s a dynamic center for collaboration, sharing groundbreaking ideas, and making discoveries. Engage in detailed discussions - [PATIENT REGISTRY](https://tango2research.org/research/registry/) - PATIENT REGISTRY ENROLL FOR A CAUSEThe TANGO2 Research has partnered with the Foundation Coordination of Rare Diseases at Sanford (CoRDS) to house patient registry data. CoRDS is a centralized international patient registry for rare diseases. The CoRDS registry allows patients and families to share important information about TANGO2 deficiency disorder with the people who can - [NEWS](https://tango2research.org/news/) - NEWS Research July 9, 2026 TDD Research Pathways Grant Applications Opening Soon! We are excited to announce the TDD Research Pathways Grant, a new funding opportunity for… Destiny Braden Love0 Spotlight June 25, 2026 Welcome, Daniella! We are excited to welcome Daniella DeLorenze as TANGO2 Research Foundation’s new Accounting Specialist consultant.… Destiny Braden Love0 Spotlight - [Quantity of Vitamin B](https://tango2research.org/quantity-of-vitamin-b/) - Quantity of Vitamin B - A Parent Perspective: Message from our Founders Mike and Kasha Morris Ryan is a 22 year old male, approximately 150 lbs and currently taking slightly over 500 mg of B5 each day (as part of a B5-specific supplement, a B50 Complex and a multivitamin). He no longer has spells or - [WAYS TO GIVE](https://tango2research.org/ways-to-give/) - WAYS TO GIVE Recurring Donations The TANGO2 Research Foundation offers monthly donation payments. Please click here to make your donation. The TANGO2 Research Foundation is a registered 501 (c)(3) charitable organization. Your contribution is tax deductible to the full extent allowed by law. Birthday Donations Have a birthday coming up? Consider celebrating for a cause by creating - [2024 Conference](https://tango2research.org/2024-conference/) - SIGN UP FOR CHILD/YOUNG ADULT CARE SERVICESACTIVITIES SCHEDULECONFERENCE PROGRAMRESORT MAP EXPLORE THE LATEST ADVANCEMENTS AND SHAPE THE FUTURE OF TANGO2 RESEARCH We are excited to announce the third TANGO2 Family Conference, scheduled from Sunday, June 23rd to Tuesday, June 25th, 2024, in Orlando, Florida! Thanks to a grant awarded to the TANGO2 Research Foundation in - [OUR MISSION & HISTORY](https://tango2research.org/about-us/our-mission-history/) - OUR MISSION & HISTORY Our mission is to lead the way in finding a cure for TANGO2 deficiency disorder. MEET RYAN Just days after his first birthday his parents, Mike and Kasha, noticed he was having trouble crawling, sitting, and holding things. He lost the words he spoke and began to regress in all areas - [GLOSSARY OF TERMS](https://tango2research.org/about-tango2/glossary-of-terms/) - GLOSSARY OF TERMS Click any Term for Definition: TANGO2 deficiency disorder TANGO2 deficiency disorder is a gene responsible for performing a specific job in the body which is actually the acronym it stands for — Transport And Golgi organization. Golgi Golgi functions as a factory in which proteins received from the endoplasmic reticulum are processed - [2023 Symposium](https://tango2research.org/2023-symposium/) - FRIDAY, OCTOBER 27, 2023 FROM 9:00 AM – 1:00 PM EST ON ZOOM RESERVE YOUR SPOTVIEW THE PROGRAM SHARING THE LATEST TANGO2 RESEARCH & BROADENING OUR RESEARCH NETWORK Led by leading TANGO2 deficiency disorder (TDD) researchers and healthcare professionals, this symposium provides a program of information-rich sessions spotlighting current research efforts propelling scientific advancements in TDD. - [WAYS TO GIVE](https://tango2research.org/ways-to-give-2/) - WAYS TO GIVE Recurring Donations The TANGO2 Research Foundation offers monthly donation payments. Please click here to make your donation. The TANGO2 Research Foundation is a registered 501 (c)(3) charitable organization. Your contribution is tax deductible to the full extent allowed by law. Employer Match Does your employer offers a matching gift program? Many companies offer matching - [GET INVOLVED](https://tango2research.org/get-involved/) - GET INVOLVED Our community is affectionally known as the TANGO2 family. We hope you will consider getting involved with us whether it is the star your skills, raise awareness, fundraise or get connected. Please fill out the form below. - [Eye Issues](https://tango2research.org/eye-issues/) - EYE ISSUES Children with TANGO2 disease can present with a variety of eye-related issues including: Ptosis droopy eyelids that come and go Exotropia eyes deviate outward. Usually intermittent occurring when a child is daydreaming, not feeling well or tired. Can lead to amblyopia or lazy eye. - [Paroxysmal Torticollis](https://tango2research.org/paroxysmal-torticollis/) - PAROXYSMAL TORTICOLLIS One of the early common, non-acute symptoms that has presented in a number of children with a TANGO2 mutation is benign paroxysmal torticollis (BPT). Other names for this may be neck tilt or head tilt. BPT typically manifests as a head tilt to one side for a few hours or days. It may not be affected by sleep. Spells - [Other Episodic (Non-seizure) Symptoms](https://tango2research.org/other-episodic-non-seizure-symptoms/) - OTHER EPISODIC (NON-SEIZURE) SYMPTOMS Intermittent and instant onset episodes can include one or more of the following symptoms: extreme fatigue (instant onset) dizziness loss of muscle control weakness garbled speech drooling swallowing issues dystonia - [Clonus](https://tango2research.org/clonus/) - CLONUS Clonus is a series of involuntary, rhythmic, muscle contractions and relaxations most commonly found at the ankle. - [Episodic Muscle Weakness](https://tango2research.org/episodic-muscle-weakness/) - EPISODIC MUSCLE WEAKNESS Reoccurring episodes of muscle weakness could be another early indicator of TANGO2 disease. Examples include: Unable to sit without falling Difficulty grasping items/toys Temporary loss of already acquired skills Sitting Crawling Pulling-to-stand Walking - [SUBMIT YOUR STORY](https://tango2research.org/for-families/submit-your-story/) - Submit Your Story To add your loved one’s story in Our Stories or Sammy’s Angels, please complete this form. 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