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 early 2023, we have designated funds to organize this empowering family conference.

As advocates for patient and family engagement, we strongly encourage you to actively participate in the research planning process. During the conference, experts will share the latest developments and insights on TANGO2, including updates on the ongoing natural history study and current research endeavors. Your valuable input will shape the direction of future investigations, directly influencing research initiatives for TANGO2 deficiency disorder.

To facilitate maximum family participation, we are delighted to inform you that the grant will cover a significant portion of the conference expenses. This includes two nights of accommodation at the Disney’s Coronado Springs in Orlando, Florida, as well as five meals over the course of the 2.5-day event. Additionally, child care will be provided for families who need it.

This is an exceptional opportunity to connect with your TANGO2 family and play a pivotal role in shaping the future of TANGO2 research. Don’t miss out on this invaluable experience!

CONFERENCE PROGRAM*

SUNDAY JUNE 23

5:00 PM – 7:00 PM
Welcome Reception

MONDAY JUNE 24

9:00 AM – 5:00 PM
Poster Sessions

8:00 AM – 9:00 AM
Breakfast

9:00 AM – 9:15 AM
Founder’s Welcome [Kasha Morris]

9:15 AM – 9:45 AM
Keynote: From Athlete, to Patient, to Advocate [Rob Long, MS]

9:45 AM – 9:55 AM
TANGO2 Basics [Seema Lalani, MD]

9:55 AM – 10:25 AM
Investigating TANGO2-Deficiency Disorder Phenotype and Mechanism in a C. elegans Model [Sarah Sandkuhler, MS]

10:25 AM – 10:55 AM
Zebrafish Models of TANGO2 deficiency for preclinical studies of TDD [Vandana Gupta, PhD]

10:55 AM – 11:15 AM
Break

11:15 AM – 11:45 AM
TANGO2 Deficiency in Arrhythmogenesis – From Bedside to Bench [Na Li, PhD]

11:45 AM – 12:15 PM
Towards an understanding of the function of TANGO2 [Michael Sacher, PhD]

12:15 PM – 1:15 PM
Lunch

1:15 PM – 1:45 PM
TANGO2 functions in the pathway of Acyl-CoA metabolism [Agustin Lujan, MD, PhD]

1:45 PM – 2:15 PM
Biosampling Appointments & Poster Session

2:15 PM – 3:00 PM
B-Vitamins and Beyond [Nourhan Suleiman, RDN, LD]

3:00 PM – 3:45 PM
Natural History Study Update & Next Steps [Christina Miyake, MD, MS]

3:45 PM – 4:15 PM
Break & Biosampling Appointments

4:15 PM – 4:45 PM
22q and TANGO2 [Donna McDonald-McGinn, MS, LCGC]

4:45 PM – 5:25 PM
End of Day Q&A Panel

5:25 PM – 5:30 PM
Closing Remarks [Seema Lalani, MD]

TUESDAY JUNE 25

9:00 AM – 5:00 PM
Poster Sessions

8:00 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 and its importance in the Rare Disease Community [Courtney Clyatt, MPH]

9:30 AM – 10:45 AM
TDD PCORI Workshop #1: Research Roadmap Development [Facilitators: Ryan Carrier, MD, Kasha Morris, Foundation Co-Founder]

10:45 AM – 11:15 AM
Break & Biosampling Appointments

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 – 1:15 PM
Lunch & Shine a Light on TANGO2 Celebration [Ann Geffen, MA, JD, & T2RF Fundraising Committee]

1:15 PM – 2:00 PM
Discussion Session Option #1: Highlighting TANGO2 Caregiving Experiences Through the Years & Sick Day Protocol [Facilitators: Kaitlyn Friar (<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]

2:00 PM – 2:45 PM
Panel Presentation: Navigating Movement Disorders associated with TDD: The Vital Role of a Movement Specialist & Families in Diagnosis and Treatment            [Samuel Mackenzie, MD, PhD, [TO BE NAMED] PT, Kara Cameron]

2:45 PM – 3:15 PM
Break & Biosampling Appointments

3:15 PM – 4:00 PM
Panel Presentation: Heart to Heart: Understanding Cardiac Challenges in TANGO2 Deficiency Disorder [Joshua Meisner, MD, PhD, Cheyenne Beach, MD, Giorgio Pochettino]

4:00 PM – 4:45 PM
Panel Presentation: Building Blocks for a Cure: Clinical Trial Readiness in TDD
[Christina Miyake, MD, MS, Charlotte Engebrecht, BS, Madeline Chadehumbe, MD]

4:45 PM – 5:15 PM
Q&A Session

5:15 PM – 5:20 PM
Closing Remarks [Ann Geffen, MA, JD]

*NOTE: The program is subject to change.

AGENDA AT A GLANCE*

SUNDAY JUNE 23

5:00 PM – 7:00 PM

Welcome Reception

MONDAY JUNE 24

9:00 AM – 5:00 PM
8:00 AM – 9:00 AM
9:00 AM – 9:15 AM
9:15 AM – 9:45 AM
9:45 AM – 9:55 AM
9:55 AM – 10:25 AM

10:25 AM – 10:55 AM
10:55 AM – 11:15 AM
11:15 AM – 11:45 AM
11:45 AM – 12:15 PM
12:15 PM – 1:15 PM
1:15 PM – 1:45 PM
1:45 PM – 2:15 PM
2:15 PM – 3:00 PM
3:00 PM – 3:45 PM
3:45 PM – 4:15 PM
4:15 PM – 4:45 PM
4:45 PM – 5:25 PM
5:25 PM – 5:30 PM

Poster Sessions
Breakfast
Founder’s Welcome [Kasha Morris]
Keynote: From Athlete, to Patient, to Advocate [Rob Long, MS]
TANGO2 Basics [Seema Lalani, MD]
Investigating TANGO2-Deficiency Disorder Phenotype and Mechanism in a C. elegans Model [Sarah Sandkuhler, MS]

Zebrafish Models of TANGO2 deficiency for preclinical studies of TDD [Vandana Gupta, PhD]
Break
TANGO2 Deficiency in Arrhythmogenesis – From Bedside to Bench [Na Li, PhD]
Towards an understanding of the function of TANGO2 [Michael Sacher, PhD]
Lunch
TANGO2 functions in the pathway of Acyl-CoA metabolism [Agustin Lujan, MD, PhD]
Biosampling Appointments & Poster Session
B-Vitamins and Beyond [Nourhan Suleiman, RDN, LD]
Natural History Study Update & Next Steps [Christina Miyake, MD, MS]
Break & Biosampling Appointments
22q and TANGO2 [Donna McDonald-McGinn, MS, LCGC]
End of Day Q&A Panel
Closing Remarks [Seema Lalani, MD]

TUESDAY JUNE 25

9:00 AM – 5:00 PM
8:00 AM – 9:00 AM
9:00 AM – 9:05 AM
9:05 AM – 9:30 AM
9:30 AM – 10:45 AM

10:45 AM – 11:15 AM
11:15 AM – 12:00 PM

12:00 PM – 1:15 PM
1:15 PM – 2:00 PM

2:00 PM – 2:45 PM

2:45 PM – 3:15 PM
3:15 PM – 4:00 PM

4:00 PM – 4:45 PM

4:45 PM – 5:15 PM
5:15 PM – 5:20 PM

Poster Sessions
Breakfast
Welcome: Moving TDD Research Forward [Deena Chisholm, MPH, CHES]
PCOR/CER and its importance in the Rare Disease Community [Courtney Clyatt, MPH]
TDD PCORI Workshop #1: Research Roadmap Development [Facilitators: Ryan Carrier, MD, & Kasha Morris, Foundation Co-Founder]

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

Lunch & Shine a Light on TANGO2 Celebration [Ann Geffen, MA, JD, & T2RF Fundraising Committee]
Discussion Session Option #1: Highlighting TANGO2 Caregiving Experiences Through the Years & Sick Day Protocol [Facilitators: Kaitlyn Friar (<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]

Panel Presentation: Navigating Movement Disorders associated with TDD: The Vital Role of a Movement Specialist & Families in Diagnosis and Treatment [Samuel Mackenzie, MD, PhD, [TO BE NAMED] PT, Kara Cameron] 

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

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

Q&A Session
Closing Remarks [Ann Geffen, MA, JD]

*NOTE: The program is subject to change.

REGISTRATION FEES:

Registration fees include the following: Sunday evening meal, Monday breakfast, Monday lunch, Tuesday breakfast, Tuesday lunch, 2 day access to kids/teens camp, and 1 hotel room per family for 2 nights.

Family Members/Students/Residents/Fellows: $100 per person

Medical/Scientific Professionals:  $300 per person

Other guests: $300 per person

If you would like to apply for a grant to attend this conference, contact grants@tango2research.org

REGISTER FOR THE CONFERENCE
SIGN UP FOR CHILD/YOUNG ADULT CARE SERVICES
BOOK ACCOMODATIONS

For information about applying for a travel grant, please contact grants@tango2research.org

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.

David Curtis, BS

David Curtis is second-year medical student at Baylor College of Medicine with a keen interest in pursuing residency programs in clinical genetics. Alongside this specialization, he is deeply invested in Health Ethics, Health policy, and the medical humanities, aiming to integrate these passions into my future medical practice.

The Driffill Family, T2RF Shine a Light Ambassador Family

Phoebe was diagnosed with Tango2 aged 6 following 4 years of unexplained medical symptoms and ‘wobbles’. She is bright, bubbly and full of joy and dearly loved. Hope and Joseph are Phoebe’s big sister and brother and do not have Tango2. Tim (Dad) works in Finance and Hannah (Mum) is a family doctor (MBChB, RCGP, FSRH). They are based in the UK.

The Fryar Family, TANGO2 Family

Kaitlyn and Russ Fryar are parents to a fun and loving TANGO2 warrior and to their strong-willed, loving 5-year-old daughter. With years of grieving and honoring their TANGO2 Hudson, they are honored to share their experiences in the hope of bringing awareness and encouragement to TDD families.

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.

Na Li, PhD

Dr. Li is a tenured Associate Professor in the Department of Medicine at Baylor College of Medicine. Her primary research objective focuses on unveiling the intricate molecular mechanisms underlying cardiac arrhythmias. The team employs genetically modified mouse models to elucidate the molecular mechanisms of common and rare forms of cardiac arrhythmias.

Rob Long, MS

In 2010, Rob Long was on the cusp of an NFL career as a star college punter at Syracuse. However, life had other plans. Five days after his final college game, Rob was diagnosed with a rare and aggressive brain tumor with an average life expectancy of just three years. Emergency surgery and treatment gave him a second chance at life. While his NFL dreams were dashed, a new purpose emerged. Today, he’s the Executive Director of Uplifting Athletes, a nonprofit using sports to raise awareness and resources for rare diseases. Under his leadership, they’ve raised over $9 million to develop leaders, fund research, create uplifting experiences, and expand rare disease awareness.

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.

Nourhan Suleiman, RDN, LD

Nourhan Suleiman is a Registered Dietitian Nutritionist graduated Summa Cum Laude with a Bachelor of Science degree in Human Nutrition and Foods from University of Houston. Nourhan completed a comprehensive Dietetic Internship of supervised practice in various settings including a level I trauma facility, Texas Children’s Hospital, and nutrition research at Johnson Space Center (NASA). Nourhan currently works at Texas Children’s Hospital. She is passionate about nutrition in the treatment of malnutrition and motility disorders & proficiently serving a diverse pediatric population. Nourhan is committed to ongoing education and constantly seeks nutrition research to ensure her practices are evidence-based and up to date.

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.

Ryan Carrier, MD

Ryan just completed his Pediatric Neurology Residency at the University of Rochester and is soon to begin a Neurogenetics Fellowship at the same institution where he will gain more experience diagnosing and treating genetic diseases with neurologic symptoms. He has become increasingly interested in clinical research of rare diseases and is lucky to be able to learn from and with the TANGO2 community. Ryan is a T2RF PCORI Project Stakeholder.

Madeline Chadehumbe, MD

Dr. Madeline Chadehumbe is a board-certified child neurologist and Division Chief of Neurology and Developmental Disabilities at Neurabilities in New Jersey and Pennsylvania. She serves on influential boards including Eden Autism, the Child Neurology Foundation, the TANGO2 advisory board, and the 22q11.2 advisory board. Actively engaged with the American Academy of Neurology, she contributes as a speaker, educator, and member of the Diversity Officer subcommittee. Dr. Chadehumbe’s focus on addressing neuropsychiatric and learning differences, particularly in 22q11.2DS, guides her clinical and research efforts, with a specific interest in TANGO2 related disorders. Dr. Chadehumbe currently serves as a member of the T2RF’s Scientific Advisory Board.

Debbie DeLoach

Debbie is a TDD angel parent of Robert, who was born with 22q11.2 DS and TANGO2 Deficiency Disorder. Robert passed away at the age of 5 in 2015. Debbie currently serves as a board member on the International 22q11.2 Foundation and has since 2020. She is a member of the T2RF Regional Coordinators, and Early Detection and Diagnostic Committee. She is also a member of the PCORI Project Stakeholder Team for the T2RF. She works in education in North Carolina.

Charlotte Engebrecht, BS

Charlotte Engebrecht is a Human Subject Research Specialist at the University of Rochester Center for Health + Technology (CHeT). Her group specializes in developing disease-specific patient and caregiver-reported outcome measures for use in therapeutic trials and patient monitoring. With a profound commitment to enhancing the quality of medical research, they focus on bringing the patient and caregiver voice to the forefront of clinical trials while adhering to FDA guidelines.

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.

Veronica Jones and Tyson Swetek, TANGO2 Family

Veronica is the mother of Thea Swetek, a 9-year-old with TANGO2 Deficiency Disorder. She is an elementary school teacher and a member of the TANGO2 Research Foundation’s Outreach committee. Tyson is the father of Thea Swetek and is an electrical engineer who resides in San Diego.

Vanni Le, MS

Vanni Le is RespectAbility’s Entertainment Outreach Program Manager, ensuring authentic disability representation in over 150 projects, including collaborations with Walt Disney Animation Studios’ title WISH. With a focus on children’s content, she promotes representation and awareness. Previously, she has worked at Walt Disney Studios, Sony Pictures Entertainment, the Annenberg Inclusion Initiative, March of Dimes, and A+E Networks. Le, a first-generation college graduate, holds an M.S. in Digital Social Media and a B.A. in Public Relations from USC.

Joshua Meisner, MD, PhD

Dr. Meisner is a pediatric cardiologist and early stage physician scientist at the University of Michigan with a clinical focus in cardiovascular genetics. He has a translational laboratory studying rare disease causes of pediatric cardiomyopathies using human cardiomyocyte model systems derived from induced pluripotent stem cells (iPSCs) and mouse models of cardiomyopathy. He is a member of the TANGO2 Research Foundation Research Committee and has a passion for understanding the mechanisms underlying TANGO2 Deficiency Disorder and advancing the care for the TANGO2 families he cares for.

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.

Giorgio Pochettino

Giorgio is an automotive sector manager and acts as chair of the TANGO2 Research Foundation Research Committee. The Research Committee’s purpose is to pursue activities that will improve the understanding of TANGO2 Deficiency Disorder with a goal of finding treatments and ultimately a cure for this disease.

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.

FREQUENTLY ASKED QUESTIONS

FAQ – ROOM & HOTEL ACCOMMODATIONS

What if I want to stay extra nights at the hotel either before or after the conference, or both?

The website is set up to offer additional pre/post nights based on availability.  The site will notate any unavailable nights if requested.  You can adjust dates of stay to book available nights.  If you still need a room for unavailable nights, you can book using our vacation rate website www.disneyworld.com or by calling our vacation line at 1-407-W-DISNEY to check for available resorts and rates.

What if I need more than 1 room reservation?

Guests may book additional rooms, however, the TANGO2 Research Foundation will only be covering the cost of 1 room per party for two nights (June 23rd & 24th 2024). Guests can book additional rooms on a first come first serve basis with no guarantee that you will be able to add rooms.

Can I add special requests to my room reservation such as connecting rooms?

Guests can add any requests (connecting rooms, adjoining rooms, room location, room view, room bedding, etc) in the ‘Requests’ field when booking their reservation.  If you are traveling with others, please include the primary guest’s name on the other reservation they wish to be near.  Please note requests are not guaranteed but the resort will try to fulfill as many requests as possible.

Are there any portable cribs available for young children?

Yes, you can contact the hotel to request a portable crib at no additional charge.

Can I add a cot or rollaway bed to a room reservation?

 Yes, you can request one, however availability is not guaranteed. Please note Tower rooms will have an air mattress, if available.

Does the hotel resort have wheelchair accessible rooms?

Yes, on the website, you can select Attendee Type 2. Accessible Room to check for ADA room availability and book one of those rooms.  If one is not showing up, book using Attendee and add a request for an ADA room and notate if a roll in shower or a tub is preferred.  We will check availability and block if the preferred ADA room type is available.

I am not able to book my room reservation using the link provided. What should I do?

You may call the Group Reservations line at 1-407-939-4686, Monday – Friday 8:30am – 6pm (EST) and Saturday – Sunday 8:30am – 5pm (EST).

The weblink says the dates I selected are fully booked. What should I do?

You may call the Group Reservations line to see if a phone agent can assist.  If the phone agent confirms there is no availability at the group rate, then guests can check the vacation website or phone number to check for available accommodations at other nearby resort hotels.

I want to call the resort hotel and speak to a person. What number should I call?

You may call the Group Reservations line at 1-407-939-4686.  Do not call the resort directly, your call will be redirected if you are not a current checked-in guest at the hotel resort.

I want to call the hotel from outside the USA. What number should I call?

1-407-939-4686 is the main line for Group Reservations.

Can I cancel or change my hotel reservation once it is made?

Yes, the confirmation email will include a link the guest can use to make modifications to their currently booked reservation.

Is there a deadline for hotel cancellations or changes?

Yes, the confirmation email will include a link the guest can use to make modifications to their currently booked reservation.

Is there a deadline for hotel cancellations or changes?

There is no deadline for changes, hotel cancellations must be made more than 5 days prior to the arrival date

I would like to make dining reservations at the hotel resort. How do I do that?

You can make Disney World dining reservations for your trip up to 60 days in advance. We strongly recommend making reservations as close as you can to the 60-day mark. Dining reservations can be made by either calling Disney Dining at (407) WDW-DINE, online using the official Disney website, or booking via the My Disney Experience app.

Are there any accommodations for guests with disabilities?

Yes, please visit Disney World Guest Services page here to view the information.

FAQ – TRAVEL

What is the address of the hotel and conference location?

Disney’s Coronado Springs Resort: 1000 W Buena Vista Dr, Lake Buena Vista, FL 32830

What is the best airport to use to get to the conference?

Orlando International Airport (Airport code: MCO). 1 Jeff Fuqua Blvd, Orlando, FL 32827. This airport is approximately 24 miles (25 minutes) to and from Disney’s Coronado Springs hotel resort.

I’m interested in renting a car. How do I do that?

Coming Soon!

FAQ – REGISTRATION

Do I have to register people who are traveling with me but who will not be attending the conference? (ex. Grandparents, spouses, children)

No, however, everyone in your group must register if they plan to participate in any part of the conference including the Meet & Greet, meals, Kid Camp/Young Adult Supervision or conference sessions.

Do I need to register infants and children under 1 years old?

Yes, all members of your group should be registered including infants and children under one years old.

Can siblings who are not affected by TANGO2 register for the Kid Camp?

Yes, please register them and you can indicate an interest in Kid Camp.  Young children to young adults are welcome at Kid Camp.

Where can I get more information about the bio bank samples?

Informational materials will be available on the website. You can also speak directly with a medical professional at the Conference before making a decision about bio bank participation.

I am an invited guest, how do I get a promo code?

Please contact info@tango2research.org

FAQ – THE CONFERENCE

When will the conference begin and end each day?

The conference will begin each day at about 9:00 AM EDT and end at about 5:00 PM EDT.  Details will be in the conference agenda as they are confirmed.

Will the conference be recorded? Streamed live? Translated?

Portions of the conference will be recorded and shared with the community at a later date. At this time, we are not planning to stream the conference live. Recording closed captioning will be available in different languages.

Is there a dress code?

We recommend business casual attire as appropriate for the event. Dress as you feel most comfortable and please remember to bring a jacket or sweater for the air-conditioned conference rooms.

Will there be engagement and networking sessions?

Yes, the conference will include social and networking opportunities throughout the conference.  Details will be in the conference agenda as they are confirmed.

Does the TANGO2 Research Foundation offer any financial assistance to attend the conference?

Yes, the TANGO2 Research Foundation does offer opportunities to get financial support for attending a the TANGO2 Family Conference. Please contact info@tango2research.org for more information.