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HOME
FULL CONFERENCE PROGRAM AGENDA AND SPEAKERS ACTIVITES SCHEDULE
SPONSORSHIP INFORMATION VIEW SPONSORSHIP PACKAGE
REGISTER
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
Visite Tango2Research.org

2026 TANGO2 Family Conference Agenda

Agenda and Speakers Coming Soon

2026 TANGO2 Family Conference Agenda

5:00 PM – 7:00 PM

Welcome Reception

12:00 PM – 5:00 PM

Poster Sessions

7:30 AM – 9:00 AM

Breakfast

9:00 AM – 9:10 AM

Founder’s Welcome [Kasha Morris]

9:10 AM – 9:40 AM

Keynote: From Athlete, to Patient, to Advocate [Rob Long, MS]

9:40 AM – 9:50 AM

TANGO2 Basics [Seema Lalani, MD]

9:50 AM – 10:20 AM

Investigating TANGO2-Deficiency Disorder Phenotype and Mechanism in a C. elegans Model [Sarah Sandkuhler, MS]

10:20 AM – 10:50 AM

Zebrafish Models of TANGO2 deficiency for preclinical studies of TDD [Vandana Gupta, PhD]

9:50 AM – 10:20 AM

Investigating TANGO2-Deficiency Disorder Phenotype and Mechanism in a C. elegans Model [Sarah Sandkuhler, MS]

10:50 AM – 11:20 AM

Break

11:20 AM – 11:50 PM

TANGO2 Deficiency in Arrhythmogenesis – From Bedside to Bench [Na Li, PhD]

11:50 AM – 12:20 PM

Towards an understanding of the function of TANGO2 [Michael Sacher, PhD]

12:20 PM – 1:30 PM

Lunch

1:30 PM – 2:00 PM

TANGO2 functions in the pathway of Acyl-CoA metabolism [Agustin Lujan, MD, PhD]

2:00 PM – 2:30 PM

Understanding neurodevelopment in TANGO2 Deficiency Disorder [Lilei Zhang, MD, PhD]

2:30 PM – 3:15 PM

Natural History Study Update & Next Steps [Christina Miyake, MD, MS]

2:00 PM – 2:30 PM

Understanding neurodevelopment in TANGO2 Deficiency Disorder [Lilei Zhang, MD, PhD]

3:15 PM – 3:45 PM

Break

3:45 PM – 4:15 PM

B-Vitamins and Beyond [Nourhan Suleiman, RDN, LD]

4:15 PM – 4:45 PM

22q and TANGO2 [Donna McDonald-McGinn, MS, LCGC]

4:45 PM – 5:15 PM

End of Day Q&A Panel]

5:15 PM – 5:25 PM

Closing Remarks [Seema Lalani, MD]

9:00 AM – 5:00 PM

Poster Sessions

7:30 AM – 9:00 AM

Breakfast

9:00 AM – 9:05 AM

Welcome: Moving TDD Research Forward [Deena Chisholm, MPH, CHES]

9:05 AM – 9:30 AM

PCOR/CER & its importance in the Rare Disease Community [Courtney Clyatt, MPH]t

9:30 AM – 10:45 AM

TDD PCORI Workshop #1: Research Roadmap Development [Facilitators: Ryan Carrier, MD, Amy Clay & Kasha Morris]

10:45 AM – 11:15 AM

Break

11:15 AM – 12:00 PM

Panel Presentation – Empowering the TANGO2 Community: Strength in Support [Amanda Hull, PhD, Vanni Le, MS, & Ronda Thorington, LPC]

12:00 PM – 1:30 PM

Lunch & Shine a Light on TANGO2 Celebration [Ann Geffen, MA, JD, & T2RF Fundraising Committee]

11:15 AM – 12:00 PM

Panel Presentation – Empowering the TANGO2 Community: Strength in Support [Amanda Hull, PhD, Vanni Le, MS, & Ronda Thorington, LPC]

1:30 PM – 2:15 PM

Discussion Session Option #1: Highlighting TANGO2 Caregiving Experiences Through the Years & Sick Day Protocol [Facilitators: Kaitlyn Fryar (<4yrs), Veronica Jones (5-11yrs), Debbie Deloach (angels), Robin Mitchell (12+)]

Discussion Session Option #2: Get it “Write” for TANGO2 [Facilitators: Chaya Murali, MD & David Curtis, BS]

2:15 PM – 3:00 PM

Panel Presentation – Navigating Movement Disorders associated with TDD: The Vital Role of a Movement Specialist & Families in Diagnosis & Treatment [Samuel Mackenzie, MD, PhD, Emily Uduezue, OTD, OTR/L, Kara Cameron]

3:00 PM – 3:30 PM

Break

3:30 PM – 4:15 PM

Panel Presentation – Heart to Heart: Understanding Cardiac Challenges in TANGO2 Deficiency Disorder [Joshua Meisner, MD, PhD, Cheyenne Beach, MD, Giorgio Pochettino]

4:15 PM – 5:00 PM

Panel Presentation – Building Blocks for a Cure: Clinical Trial Readiness in TDD [Christina Miyake, MD, MS, Charlotte Engebrecht, BS, Madeline Chadehumbe, MD]

5:00 PM – 5:25 PM

Q&A Session

5:25 PM – 5:30 PM

Closing Remarks [Ann Geffen, MA, JD]

*NOTE: The program is subject to change.

SPEAKERS

Courtney Clyatt, MPH

Courtney Clyatt is a Senior Program Officer for Engagement at the Patient-Centered Outcomes Research Institute (PCORI). She came to PCORI with more than 10 years of experience in public health and project management. In her position, she has played a vital role in the Engagement Awards program and, specifically, the Pipeline to Proposal Awards, which funded community-building and engagement projects. Currently, her work has been focused on helping smaller organizations to build capacity to engage in patient-centered comparative effectiveness research.

Vandana Gupta, PhD

Dr. Gupta’s laboratory studies the genetics of neuromuscular diseases. Her research group has identified several new genes in neuromuscular diseases and developed animal models to test novel therapeutics and study disease pathophysiology.

Agustin Lujan, MD, PhD

Agustin Lujan is a passionate scientist in the fields of medicine, technology, and education. He obtained his MD from UNCuyo in Argentina and pursued a PhD at CONICET under the guidance of Professor Rabinovich and Professor Damiani. Afterward, he moved to Spain, where he did his postdoctoral research at Professor Malhotra’s lab in the CRG Barcelona. He is honored to have received the prestigious EMBO and Marie Curie fellowships.

Donna McDonald-McGinn, MD, MS, LCGC

Donna is the Director of the 22q Center and Chief of the Genetic Counseling Section at Children’s Hospital of Philadelphia, also serving as Professor at the University of Pennsylvania. As Chair of the 22q11.2 Society and a Founding Board member of the International 22q11.2 Foundation, she leads global initiatives, focusing on chromosome 22q11.2 copy number variants. With over 350 publications, including a textbook on 22q11.2 deletion syndrome, she specializes in understanding outcomes in patients with chromosome 22q11.2 deletions and variants, particularly TANGO2 Deficiency Disorder. Donna currently serves as a member of the T2RF’s Scientific Advisory Board.

Christina Miyake, MD, MS, MPH

Dr. Christina Miyake is a pediatric cardiologist/electrophysiologist and the Director of the Cardiovascular Genetics Arrhythmia Program. She has been helping lead the Natural History Study of TANGO2 Deficiency Disorder. Her work focuses on better understanding this disease from all aspects – clinical, bench research, family and patient perspective with an ultimate goal to find answers that can help manage, treat, improve outcomes and someday find a cure. Dr. Miyake currently serves as a member of the T2RF’s Scientific Advisory Board.

Chaya Murali, MD

Dr. Chaya Murali is a pediatric geneticist at Texas Children’s Hospital in Houston, Texas. Her research is focused on quality of life and lived experiences in people with genetic diagnoses and their families. Dr. Murali spearheaded a study of quality of life in the TDD community in 2019, and she currently serves as part of the TDD PCORI stakeholders team. In addition to her work as a physician, Dr. Murali is a published personal essayist, and some of her writing can be viewed at www.chayanautiyalmurali.com.

Michael Sacher, PhD

Michael Sacher received his PhD in biochemistry from McGill University followed by postdoctoral work in the Department of Cell Biology at Yale University. His work led to the discovery of the TRAPP complexes that are critical for moving proteins between specific cellular compartments. More recently, his laboratory became interested in TANGO2 and they established several model systems including fruit flies and human fibroblasts to aid in their work. These studies have led to the discovery that vitamin B5 alleviates cellular defects associated with non-functional TANGO2. Dr. Sacher currently serves as a member of the T2RF’s Scientific Advisory Board.

Sarah Sandkuhler, BS

Sarah Sandkuhler is an MD/PhD student in the Pathology department at the University of Rochester School of Medicine and Dentistry. She is working on her thesis in the lab of Samuel Mackenzie, studying TANGO2 Deficiency Disorder in a C. elegans (worm) model. Her clinical interests include neurogenetics and the development of improved gene replacement therapeutic strategies. When not in the lab, she can be found swing dancing, singing in choir, and spending time with her cat, Beatrice.

PANELISTS

Cheyenne Beach, MD

Dr. Beach is a pediatric cardiologist and the director of pediatric electrophysiology at Yale New Haven Children’s Hospital. She completed her general pediatric and pediatric cardiology training at the University of Pittsburgh Medical Center and then advanced training in pediatric and congenital electrophysiology at the University of Michigan. She enjoys caring for patients and families and participates in research to improve the care that can be provided. Dr. Beach is a member of the TANGO2 Research Foundation’s Scientific and Clinical Advisory Boards.

Kara Cameron

Kara is mom of two, Braxton and TANGO2 warrior Bria. Kara is the Treasurer of the TANGO2 Research Foundation and sits on the Research, Fundraising, and Executive Committee. She is Canada’s Regional Coordinator. Kara is also President and Founder of the Canadian TANGO2 Rare Disease Foundation. Kara is a CPA from Nova Scotia, Canada and the Vice President of Accounting and Financial Reporting at Canadian Real Estate Investment Trust, Crombie REIT.

Amanda Hull, PHD (DPsych Ed)

Amanda Hull is from Suffolk in England. Her and husband, Daniel, have three boys;Joe 13, Sebby 11 and Walter 6. Sebby, who is a 13-year-old diagnosed with TANGO2 Deficiency Disorder. She has worked as an Educational Psychologist for the past 18 years, and Daniel is a farmer. They live on a farm and have an active lifestyle with all of them enjoying being outdoors and doing adventurous activities.

Robin Mitchell, MHSA

Robin Mitchell is Mom to Hanna, diagnosed with TANGO2 Deficiency Disorder at age 27 in 2022. Robin is a graduate of Michigan State University and the University of Michigan and is enjoying a recent retirement. She spent 32 years as a health care policy analyst at Blue Cross Blue Shield of Michigan in Detroit, supporting the development of programs designed to help increase quality and decrease cost of healthcare in Michigan.

Ronda Thorington, LPC

Ronda Thorington is a Licensed Professional Counselor with a remarkable career spanning over 20 years. She is devoted to providing mental health treatment to families and individuals of all ages, in diverse roles and settings. In 2012, her life took a turn when one of her three children was diagnosed with Mixed Connective
Tissue Disease at the age of four. She now uses her clinical expertise to coach families facing life-changing medical diagnoses by sharing valuable tools and strategies developed throughout her journey. Ronda supports families by empowering them to navigate these challenges with resilience, self-advocacy, and hope.