This mini scientific symposium is primarily designed for healthcare professionals and researchers, and the presentations may include detailed and technical information. While the content is not specifically tailored for a general audience, all are welcome to attend.
1:00 PM – 1:05 PM
Welcome
Deena Chisholm, MPH, CHES
1:05 PM – 1:35 PM
TANGO2: From Mitochondrial Lumen Localization to Lipid-Chain Interactions
Agustin Lujan, MD, PhD
1:35 PM – 2:05 PM
Unveiling Novel Insights into the Pathophysiology of TANGO2 Deficiency Disorder Using Integrated Functional and Multiomic Studies
Lina Ghaloul-Gonzalez, MD
2:05 PM – 2:35 PM
TBD
TBN
2:35 PM – 3:05 PM
Metabolic Crisis Causes QT prolongation in TANGO2 Deficiency Disorder
Lili Wang, PhD
3:05 PM – 3:20 PM
Break (Poster Session)
3:20 PM – 3:50 PM
Understanding TANGO2 Deficiency Disorder via Genotype-Phenotype Correlations in 22q11.2 Deletion Syndrome
Donna McDonald-McGinn, MS, LCGC & Beata Nowakowska, PhD
3:50 PM – 4:20 PM
Therapeutic Developments in TDD
Vandana Gupta, PhD
4:20 PM – 4:50 PM
Higher-ordered Organization of TANGO2 is a Prerequisite For its Function
Michael Sacher, PhD
4:50 PM – 5PM
Audience Q&A
Sam Mackenzie, MD, PhD – Moderator
5:00 PM – 7:00 PM
Welcome Reception
Join us in Monterrey Rooms 1, 2, and 3 for the Welcome Reception, and don’t forget your 2026 TANGO2 Family Conference t-shirts!
12:00 PM – 5:00 PM
Poster Sessions
8:00 AM – 9:00 AM
Breakfast
9:00 AM – 9:10 AM
Welcome
Mike & Kasha Morris
9:10 AM – 9:30 AM
Keynote
TBN
9:30 AM – 10:00 AM
From Observation to Impact: TANGO2 Natural History Study Updates – Developing TDD Acute Care Clinical Guidelines
Samuel Mackenzie, MD,PhD & Jonathan Scaccia, PhD
10:00 AM – 10:30 AM
From Observation to Impact: TANGO2 Natural History Study Updates – Nutrition Matters: Supporting Health Day to Day
Mousumi Bose, PhD
10:30 AM – 10:50 AM
Break (Poster Session)
10:50 AM – 11:40 AM
From Observation to Impact: TANGO2 Natural History Study Updates – Looking Ahead: What Long-Term Follow-Up Tells Us
Christina Miyake, MD, MS, MPH
11:40 AM – 11:50 AM
Audience Q&As
Seema Lalani, MD – Moderator
12:00 PM – 1:30 PM
Lunch
1:30 PM – 2:00 PM
You Spoke, We Listened: A Transparent Look at Community Priorities and Rare Disease Research Funding
Deena Chisholm, MPH, CHES & Courtney Clyatt, MPH
2:00 PM – 3:00 PM
TDD PCOR Workshop Part 1 Researching the Core: Unveiling What the Community Values Most
Group Breakout Session
3:05 PM – 3:50 PM
Panel Presentation – Bridging the Gap Between TDD Community Needs, Research and Regulatory Agendas
Julie Tierney, JD & Ron Bartak
3:50 PM – 4:10 PM
Break (Poster Session)
4:10 PM – 4:55 PM
Panel Presentation – Giving Voice to TANGO2: Speech Challenges, Strategies, and Hope
Erin Kaiser, MA, CCC-SLP, Amy Clay, and Kasha Morris
4:55 PM – 5:05 PM
Audience Q&A
Seema Lalani, MD – Moderator
5:05 – 5:10 PM
Adjournment
Ann Geffen, JD, MA
9:00 AM – 5:00 PM
Poster Sessions
8:00 AM – 9:00 AM
Breakfast
9:00 AM – 9:05 AM
Welcome
Michael Sacher, PhD
9:05 AM – 10:35 AM
From Lab Discoveries to Patient Impact: The Latest in TDD Research
Sarah Sandkuhler, MD, PhD (cand), Vandana Gupta, PhD, Lauren Peacoe, BS, Agustin Lujan, MD, PhD, Weiyi Xu, PhD
10:35 AM – 10:50 AM
Break (Poster Session)
10:50 AM – 11:35 AM
Panel Presentation- Understanding the TANGO2 Brain: Development, Injury, and Lived Experience
Kimberly Houck, MD, Robin Mitchell,
11:35 AM – 12:05 PM
Panel Presentation- Advocating for Your Warrior: A Panel Perspective
Chaya Murali, MD (moderator), Amanda Hull, Cheyenne Beach, MD, and Tyson & Veronica Swetek
12:05 PM – 12:20 PM
Audience Q&A
Seema Lalani, MD
12:20 PM – 1:50 PM
Lunch & Shine a Light Celebration
1:50 PM – 2:35 PM
Behind Every TDD Warrior Is a Caregiver, Rare and Resilient: Tools & Strategies to Cultivate Hope, Community, and Well-Being
Julie Wells, & Kasha Morris
1:50 PM – 2:35 PM
Discussion Sessions: Family Experiences Through the Years
Option 1: Tips for Managing Your Warrior’s Challenging Behaviors (Birth through 12 years old)
Option 2: Pre-teens and Beyond: Adapting to Your Warriors Changing Needs (13 through 19 years old)
Option 3: Transitioning Your Warrior into Adulthood (20+ years old)
Option 4: “Get it Write” for TDD
Option 5: Angel & Family Support Circle
Group Breakout Sessions
3:35 PM – 3:50 PM
Break (Poster Session)
3:50 PM – 5:05 PM
TDD PCOR Workshop Part 2: Researching the Core: Unveiling What the Community Values Most
Group Breakout Sessions
5:05 PM – 5:10 PM
Adjournment
Ann Geffen, JD, MA
*Agenda subject to change
