Jan and Dan Duncan Neurological Research Institute, on the campus of Texas Children's Hospital
Roar 2026: The CASK Conference
November 10 - 12
Conference location:
Jan and Dan Duncan Neurological Research Institute
Texas Children's Hospital
1250 Moursund St, Houston, Texas 77030
Hotel location:
Hilton Houston Plaza/Medical Center
*Before booking your stay, please see our Important Details section below for additional information
Texas Children's Hospital NRI Auditorium
Hilton Houston Plaza Courtyard
You’re invited to the inaugural Roar 2026: The CASK Conference! We’re bringing together individuals with CASK gene disorders, their families, researchers, and healthcare professionals to discuss the latest advancements, research, and community support.
All guests are invited to the welcome reception on Tuesday evening at the newly renovated Hilton Houston Plaza/Medical Center hotel. Then you’ll experience two full days of conference sessions at the spectacular Jan and Dan Duncan Neurological Research Institute (NRI) - located just a half mile from the hotel - with lunches provided and plenty of opportunities to interact with each other. Dinner celebrations (and even a dance party) will follow on Wednesday and Thursday evenings at the hotel. What a great opportunity to be surrounded by those that care the most about our children - CASK families and the scientists working to find a cure!
We are happy to offer Camp Roar!, licensed care for our loved-ones of all ages that are affected by CASK, as well as their siblings ages 17 and under. When registering, be sure to buy your child a ticket to this fun, theme-based event, tailored just for them, and held on-site at the NRI during the conference sessions. A Camp Roar! information packet for each camper will be provided closer to the conference along with registration forms for you to fill out and return.
Event At A Glance
Tuesday 10 November
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Hotel and ROAR 2026: The CASK Conference check-in
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Scientific Advisory Board meeting - private
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Welcome Reception for the entire CASK community at the hotel
Wednesday 11 November
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The CASK Conference kicks off with Science Day at the NRI!
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Expert presentations on the clinical landscape and treatment pipeline, as well as Q&A sessions and panels
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Camp ROAR! for the children and CASK adults
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COMBINEDBrain bio-sample collection for families
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Lunch for all attendees
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Conference Celebration and Awards Dinner at the hotel
Thursday 12 November
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Family Day conference sessions at the NRI!
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Special guest keynote speaker
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Presentations from parents, caregivers and other experts in our community including panels and interaction opportunities
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Camp ROAR! continues
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Lunch for all attendees
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Dinner and Dance Party at the hotel
Important Details
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Early Bird Pricing ends on September 30, 2026 at 11:59pm PST.
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Registration closes on October 10, 2026 at 11:59pm PST.
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A conference ticket is required for each Camp Roar! registration. The conference ticket covers your child's lunches, dinners, snacks, a t-shirt, and a swag bag. Camp Roar! childcare is billed separately; Project CASK is covering 75% of the cost, with the remaining balance due from families at registration.
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We understand hotel, childcare and travel can be a financial burden. To help assist with financial barriers, we have compiled a list of potential resources for assistance with travel expenses to the CASK Conference. Additionally, we are offering a fundraising/sponsorship incentive to help cover ticket costs for CASK families.
Booking your stay at the Hilton
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Guests must book their hotel reservations directly through our link in order to receive the special rate.
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All hotel room reservations include breakfast buffets for two adults, per night.
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Self-parking is available at the hotel at $20/night.
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If you would like to request a crib be placed in the room, or are in need of a microwave in the room, please add those requests in the Special Requests/Comments section of the hotel booking form. These items are subject to availability.
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Plan to stay through the evening of November 12 — Family Day closes with a dinner and dance party, and three nights at the conference hotel will ensure you don't miss a thing!
Texas Children's Hospital, Jan and Dan Duncan NRI
Roar 2026 Speakers
More than twenty speakers will present at Roar 2026: The CASK Conference, held November 10 to 12, 2026 at the Jan and Dan Duncan Neurological Research Institute at Texas Children's Hospital in Houston, Texas.
Dr. Debbie Sukin
WELCOME REMARKS
President, Texas Children's Hospital
Dr. Matthew Anderson
KEYNOTE SPEAKER
Co-Director, Oxford-Harrington Rare Disease Centre
Jess Ronne
KEYNOTE SPEAKER
Caregiver Advocate and Associate Producer, Unseen and Uncertain Documentaries
Dr. Huda Zoghbi
KEYNOTE SPEAKER
Director, Jan and Dan Duncan Neurological Research Institute
Dr. Kim Aldinger
Seattle Children's Research Institute
Edgenie Bellah
Texas Deafblind Project of TSBVI
Kelsey Burke
Occupational Therapist
Dr. Stephanie DeLuca
Neuromotor Research Clinic, Fralin Biomedical Research Institute at VTC
Dr. Matthew Fuller
VP Gene Therapy, Ultragenyx
Dr. Allison Knoll
Fractional Scientific Director, Project CASK
Dr. Hans-Jürgen Kreienkamp
University Medical Center Hamburg-Eppendorf, Germany
Mary McDirmid
ChSNC, ChFC, Co-founder and CFO, All Needs Planning
Dr. Konark Mukherjee
University of Alabama at Birmingham
Dr. Xilma Ortiz-Gonzalez
Children's Hospital of Philadelphia
Dr. Chang-Hui Pak
UMass Amherst
Dr. Sarika Srivastava
University of Alabama at Birmingham
Dr. Katsuhiko Tabuchi
Shinshu University, Japan
Dr. Mingshan Xue
Baylor College of Medicine
Full Agenda: Roar 2026
November 10 to 12, 2026 | Houston, Texas.
Tuesday, November 10: Pre-Conference and SAB Day
12:00 PM to 7:00 PM, Hilton Houston Plaza/Medical Center
12:00 to 6:00 PM | Registration
Conference and Camp ROAR! check-in. Hilton Hotel.
1:00 to 4:00 PM | Scientific Advisory Board Meeting
Project CASK Scientific Advisory Board meeting and lunch. Hilton Hotel.
Closed session.
4:00 to 5:15 PM | Clinician Meeting
Clinician focus group. Hilton Hotel.
Closed session. To be confirmed.
5:00 to 7:00 PM | Welcome Reception
Hosted by Cindy Shulz, champion of children with disabilities, author of Shine On, and Project CASK Volunteer. Hilton Hotel.
5:45 PM | Project CASK Meeting
Scientific Advisory Board, invited scientists, and leadership team depart for offsite event.
Invitation only.
Evening | Open Evening
Unscheduled evening for dinner on your own, family time, and rest. Common areas, on and off site dining, room service.
Wednesday, November 11: Science Day
7:00 AM to 8:00 PM, Jan and Dan Duncan Neurological Research Institute
ARRIVAL
7:00 to 8:00 AM | Shuttle or walk to the Jan and Dan Duncan Neurological Research Institute.
7:30 to 8:20 AM | Welcome coffee, Camp ROAR! drop off, final call registration.
WHY ROAR MATTERS
8:30 to 8:50 | Welcome: Who is in this room and why it matters
Hitomi Kubo, Project CASK, and Dr. Debbie Sukin, President, Texas Children's Hospital.
8:50 to 9:10 | Keynote: What gives me hope for children with rare neurological disorders today
Dr. Huda Zoghbi, Director, Jan and Dan Duncan Neurological Research Institute.
BLOCK I - THE FUNDAMENTALS OF CASK AND WHAT WE KNOW
9:15 to 9:35 | Phenotypes of CASK loss of function variants
Dr. Konark Mukherjee, University of Alabama at Birmingham.
9:35 to 9:55 | How the human cerebellum is built and what that tells us about CASK
Dr. Kim Aldinger, Seattle Children's Research Institute.
10:00 to 10:20 | CASK and mitochondria: what the metabolic dimension tells us
Dr. Sarika Srivastava, University of Alabama at Birmingham.
10:20 to 10:35 | Sex-specific genotype-phenotype landscape and prevalence of CASK-related disorder
Dr. Kevin Jiang, Baylor College of Medicine.
10:35 to 10:40 | Rapid round: the one thing I most want you to remember
All Block I speakers.
10:40 to 11:10 | Break
Camp ROAR! check-in, coffee, and speaker office hours. All four Block I speakers at named tables.
BLOCK II - THE CLINICAL SPECTRUM OF CASK: FEATURES AND TRAJECTORIES
11:10 to 11:25 | What is a natural history study, and why is it important?
Speaker confirmation forthcoming.
11:25 to 11:45 | Clinical features of CASK
Dr. Xilma Ortiz-Gonzalez, Children's Hospital of Philadelphia.
11:45 AM to 12:05 | Helping Children with CASK ROAR: Evidence-Informed Pediatric Rehabilitation Strategies Supporting Development for Children with CASK
Dr. Stephanie DeLuca, Neuromotor Research Clinic, Fralin Biomedical Research Institute at VTC.
12:05 to 12:30 | What Our Data and Our Families Tell Us Matters
Moderated panel with the Project CASK team, Citizen Health, and CASK families.
Participants to be confirmed.
GROUP PHOTO AND LUNCH
12:35 to 12:45 | Group photo
All attendees.
12:45 to 1:45 | Researcher and family lunch
Structured tables with scientist rotations.
BLOCK III - TOWARD A THERAPY: PIPELINE, EXPLORATORY STRATEGIES, AND OUR ROADMAP
1:45 to 2:05 | Keynote: Building the bridge from a discovery to a medicine
Dr. Matthew Anderson, Co-Director, Oxford-Harrington Rare Disease Centre.
2:05 to 2:25 | Gene Therapy 101: The basics
Dr. Matthew Fuller, VP Gene Therapy, Ultragenyx.
2:25 to 2:45 | The CASK gene supplementation therapy
Dr. Mingshan Xue, Baylor College of Medicine.
2:45 to 3:00 | Stretch
Optional Camp ROAR! check-in.
3:00 to 4:00 | Building a bridge from mechanism to medicine: stem cell models of CASK related disorders and small molecule approaches to treat CASK
Dr. Chang-Hui Pak, UMass Amherst. Dr. Hans-Jürgen Kreienkamp, University Medical Center Hamburg-Eppendorf, Germany. Dr. Katsuhiko Tabuchi, Shinshu University, Japan. Dr. Konark Mukherjee, University of Alabama at Birmingham. Dr. Mukherjee's participation on this panel to be confirmed.
4:00 to 4:20 | Building the Therapeutic Roadmap for CASK-Related Disorders: Current Priorities and Emerging Strategies
Dr. Allison Knoll, Fractional Scientific Director, Project CASK.
CLOSING. WHERE WE GO FROM HERE
4:20 to 4:50 | Scientist round-robin question and answer
All scientists and researchers.
4:50 to 5:00 | Closing remarks
Project CASK leadership.
5:00 | Parents pick up children from Camp ROAR!
5:00 to 6:00 | Attendees travel to hotel. Shuttle sign-up or walking.
6:30 to 8:00 | Dinner at the Hilton Hotel
Thursday, November 12: Family Day
7:00 AM to 9:00 PM, Jan and Dan Duncan Neurological Research Institute
Running all day, 10:00 AM to 2:00 PM
These sessions run concurrently with the Family Day program. Families may step out of any session to participate.
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CombinedBrain Biorepository sample collection
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Citizen Health digital natural history enrollment
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Ask a Genetic Counselor one-on-one sessions
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Additional sessions to be confirmed
HOTEL AND ARRIVAL
7:00 to 7:45 | Coffee Connections at the hotel
7:30 to 8:30 | Travel to the Jan and Dan Duncan Neurological Research Institute and Camp ROAR!
8:00 to 8:30 | Camp ROAR! check-in.
OPENING THE DOOR TO A JOY-FILLED FUTURE
8:45 | Welcome to Family Day: Why it is important to build connections of all kinds, supporting us to support those we love
Renée Roquet, Project CASK, and Kelsey Joseph, Registered Nurse and Project CASK Volunteer.
8:50 | Joy in Living with CASK
Video.
9:00 | Keynote: Be the Bison, tools focusing on self-care and building resiliency
Jess Ronne, Caregiver Advocate and Associate Producer of Unseen and Uncertain Documentaries.
10:00 | Break and Connections
10:30 | Creating a Joy-Filled Future for our CASK Children and Families
Edgenie Bellah, Texas Deafblind Project of TSBVI, and Kim Pulliam, Project CASK.
11:30 | Therapy in Everyday Life: How you can promote progress right where you are
Kelsey Burke, Occupational Therapist.
GROUP PHOTO AND LUNCH
12:20 - 12:35 | Group photo
All attendees.
12:35 to 1:35 | Lunch Connections
Planning and Community Support Makes It All Possible
1:35 | What Do You Need? How Can We Help You Next?
Cindy Shulz and Kelsey Joseph.
1:50 | Financial Planning for Your Family
Mary McDirmid, ChSNC, ChFC, Co-founder and CFO, All Needs Planning.
3:00 | How to Get Involved in Our Community: What's next, and where we need your help
Project CASK leadership.
3:30 | Conference Sessions Closing: Final Call to Action
Project CASK leadership.
3:35 | Parents pick up children from Camp ROAR! and travel to hotel.
CELEBRATION
6:00 to 9:00 | Dinner and dance party at the Hilton Hotel
Agenda subject to change. Speaker confirmations and session details will be updated as the program is finalized.
Conference Attendance Terms & Conditions
Refund and Cancellation Policy Due to the amount of pre-paid expenses, we cannot offer ticket refunds. However, if your plans change and you are no longer able to attend after you have registered, please notify us as soon as possible. This will help us manage our resources in the most resourceful way.
Terms and Conditions Your personal data will be collected to manage your registration and participation in connection with the conference and will be shared with Project CASK and it's affiliates, and with vendors who are coordinating the logistics for the conference. Your data will not be sold to any third parties.
Audio/Visual Waiver By registering for the Roar 2026 CASK Conference, all participants, including speakers and attendees, agree to: (a) be photographed, filmed, recorded, or videotaped by a Project CASK representative and other business partners working with Project CASK. Participation in or attendance at this meeting constitutes the voluntary consent of the participant or attendee to: (a) be photographed, filmed, recorded, or videotaped by a Project CASK representative and other business partners working with Project CASK and (b) the reproduction, distribution, and use of all such photographs, digital images, films, voices, recordings, actions, names, and likenesses for any lawful purpose, including for PR or marketing purposes, such as brochures, fundraising, annual reports, media advertising or articles, websites, social networking sites and other print and digital communications, or any other ways that might contribute to the mission of Project CASK, without payment and any other consideration. This authorization extends to all languages, media, formats and markets now known or hereafter devised. This authorization shall continue indefinitely, unless participant or attendee otherwise revokes said authorization in writing. Participant or attendee understands and agrees that these materials shall become the property of Project CASK and will not be returned. Participant or attendee hereby holds harmless, and releases Project CASK from all liability, petitions, and causes of action which participant or attendee, their heirs, representative, executors, administrators, or any other persons may make while acting on participant or attendee’s behalf or on behalf of their estate.
Liability Waiver Attendees, for themselves, their family, successors, and assigns do forever release, waive, discharge, and covenant not to sue Project CASK, its board of directors, board members, officers, agents, servants, affiliates, employees, successors, and assigns (collectively the “Released Parties”) from any and all liability, claims, demands, actions, and causes of action whatsoever, directly or indirectly arising out of or related to any loss, damage, or injury, including death, that may be sustained by me related to my attendance at the Roar 2026 CASK Conference. Attendees agree to indemnify, defend, and hold harmless the Released Parties from and against any and all costs, expenses, damages, claims, lawsuits, judgments, losses, and/or liabilities (including attorney fees) arising either directly or indirectly from or related to any and all claims made by or against any of the Released Parties due to bodily injury, death, loss of use, monetary loss, or any other injury from or related to their attendance at Roar 2026: The CASK Conference.
Code of Conduct We value the participation of each community member and endeavor to deliver an enjoyable and fulfilling experience. Conference participants are expected to conduct themselves with integrity, courtesy, and respect for others and maintain the highest level of professionalism at all conference programs and events. All attendees, speakers, organizers, volunteers, vendors, and staff at the Conference are required to observe the following Code of Conduct: Project CASK is dedicated to providing a harassment-free conference experience for everyone, regardless of gender, sexual orientation, disability, physical appearance, body size, race, or religion. We do not tolerate harassment of conference participants in any form. All communication should be appropriate for a professional audience, including people of diverse backgrounds and cultures. Sexual language and imagery are not suitable for the Conference. Be kind to others. Do not insult or defame participants. Harassment in any form, such as sexist, racist, or exclusionary jokes, is not condoned at Project CASK events. Participants violating these rules may be asked to leave the Conference at the sole discretion of Project CASK. All attendees must follow Conference protocols while participating in Conference events and activities. Failure to follow all protocols in effect and required by Project CASK, the venue provider, and governing authorities during the Conference may result in registration cancellation without refund.