The CACNA1A Foundation’s Creating Connections Community Conference will bring together patients and families, scientists and doctors, care providers, and therapists to learn, connect, and share knowledge, experiences, and strategies to enhance the lives of those affected by CACNA1A-related diseases.

photo from the 2024 conference

2026 Conference Details - The Westin Oaks Houston at the Galleria, Houston, Texas

Register for the Conference
Book a Hotel Room

The true cost of the conference is approximately $750 per person; however, generous sponsor and donor support help keep registration accessible for families. If you’re able, please consider joining as a Corporate Sponsor (several levels available), Friend of the Foundation ($250) or Family Sponsor ($500) by selecting the Sponsorship button during registration or by contacting Shira@cacna1a.org

  • Register and join us for two days of education, fun, and friendship. The conference will provide attendees with:

    • The latest CACNA1A diagnosis, treatment and research information from the world’s leading CACNA1A clinicians and scientists;

    • The opportunity to meet other families and individuals with CACNA1A and make life-long connections;

    • Networking opportunities and Q&A sessions to foster new relationships and collaborations with clinicians, researchers and service providers;

    • Opportunities to participate in clinical assessments for ataxia, eye movement disorders, and dystonia.

    • Opportunities to meet in a one-on-one setting with experienced genetic counselors and pediatric physical therapist, Theresa Spong

    • A better understanding of the role that the CACNA1A Foundation plays in accelerating research for CACNA1A-related disorders;

    • A professionally staffed CAMP CACNA1A for children on Friday and Saturday; and

    • Breakfast each day/Fri night event and a family dance party on Saturday night.

      We hope to see you there! If you're unable to attend in person, the conference is also available virtually.

  • View the Draft Agenda HERE

    Thursday, July 9th

    Participate in research: Clinical assessments of movement, dystonia, and eye movement disorders will be conducted throughout the day.

    Physical Therapy Consults - Theresa Spong, MED, PT, CBP, who has decades of experience working with complex children and is grandmother to CACNA1A Champion Louise, has generously offered to meet with families to discuss physical therapy strategies and adaptive equipment. Advance signup is required.

    Genetic Counseling Consults - Laina Lusk, MMSc, LCGC, is a genetic counselor in the division of neurology at the Children’s Hospital of Philadelphia (CHOP). She works with Dr. Ingo Helbig who has a large number of patients of with CACNA1A-related disorders. Appointments to review your genetic report will be available on a first-come first-serve basis.

    Friday, July 10th - Conference Sessions on Clinical Care, Research, and Genetics - These sessions will feature opportunities to learn more about symptoms and best practices in clinical care from expert physicians and to get updates on the latest CACNA1A research from the CACNA1A research network. The day will conclude with a reception for the adults and a movie night for the children.

    Saturday, July 11th - Conference Sessions on Family Support Topics - These sessions will feature information and resources to help families navigate the challenges of CACNA1A-related diseases, and provide opportunities to strengthen connections and support across the community. The day will end with a family dinner & dance party.

  • Conference registration fees cover educational sessions, conference materials, breakfast and dinner during the conference, and all weekend events. If you would like your child to attend CAMP CACNA1A, there is an additional fee. If your child will not participate in CAMP CACNA1A but will join us for meals, they must be registered. We encourage you to register before the June 10, 2026 deadline. If you have any questions, please email info@cacna1a.org.

    REGISTER HERE - https://cacna1a.networkforgood.com/events/93828-2026-creating-connections-community-conference

    Early-Bird Registration by February 28, 2026

    In-Person Pass for Adult
    $150

    In-Person Pass for Child age 12 and under (includes CAMP CACNA1A)
    $125

    In-Person Pass for Child 13 to 18 years of age (includes CAMP CACNA1A) $150.00

    In-Person Pass for Child age 12 and under (does not include CAMP CACNA1A) $75

    In-Person Pass for Child 13 to 18 years of age (does not include CAMP CACNA1A) $100 ‍

    Virtual Attendee Ticket: includes one login and access to sessions for both days
    $50

    Registration from March 1, 2026 - May 31, 2026

    In-Person Pass for Adult
    $175

    In-Person Pass for Child age 12 and under (includes CAMP CACNA1A)
    $150

    In-Person Pass for Child 13 to 18 years of age (includes CAMP CACNA1A)

    $175 ‍ ‍

    In-Person Pass for Child age 12 and under (does not include CAMP CACNA1A) $100

    In-Person Pass for Child 13 to 18 years of age (does not include CAMP CACNA1A) $125‍ ‍

    Virtual Attendee Ticket: includes one login and access to sessions for both days
    $75

    Late Registration - June 1, 2024 - June 10, 2026 **Virtual available until July 5, 2026

    In-Person Pass for Adult
    $250

    In-Person Pass for Child age 12 and under (includes CAMP CACNA1A)
    $225

    In-Person Pass for Child 13 to 18 years of age (includes CAMP CACNA1A) $250.00

    In-Person Pass for Child age 12 and under (does not include CAMP CACNA1A) $175

    In-Person Pass for Child 13 to 18 years of age (does not include CAMP CACNA1A) $200 ‍

    Virtual Attendee Ticket: includes one login and access to general sessions for both days
    $100

  • The CACNA1A Foundation has once again hired Corporate Kids Events (CKE) to staff CAMP CACNA1A for children ages 0-18 during the Conference. Camp CACNA1A will be open on Friday, July 10th, and on Saturday, July 11th, starting at 8:00 am. You must pick your child up for lunch. On Friday evening, there will be a pizza-and-movie night for all campers while parents attend the Welcome Cocktail Party. There is a limit of 50 children total (including those with CACNA1A and their siblings), so availability is on a first-come basis.

    CKE program managers are experienced childcare professionals certified in CPR and first aid, have specialized training in special needs childcare, and are cleared to work with children.

    CKE provides complete, day-camp-style programs that include a variety of arts and crafts, games, and age-appropriate activities. Every program session revolves around a different theme, and multi-day programs will feature multiple themes. CK provides dynamic, imagination-based activities that promote teamwork and personal interaction. CKE will occasionally show age-appropriate movies and videos (after-lunch breaks, for example, or later during evening sessions) and often have music playing during their programs. CKE emphasizes interpersonal communication, physical movement, and stimulating activity.

    All CKE staff are required to provide copies of all certifications, clearances, and detailed resumes. CKE performs interviews, extensive reference checks, and security background checks on each potential staff member. All hired CKE Staff attend special trainings and orientation before the event. Staff is briefed on the planned schedule of activities, children attending, the overall conference group, and emergency procedures specific to each event location.

    CKE’s safety program includes the use of ID bracelets, secure sign-in and sign-out procedures, and a digital photo security system. CKE staff will review each child’s dietary and medical needs before the event. Please note that CKE staff will only change diapers for children ages 0-4 years.

  • NOTE: As of 4/6/26, all scholarships have now been awarded and the application is closed. If additional funding becomes available, we will reopen applications. The CACNA1A Foundation (CF) provides a limited number of scholarships to CACNA1A-affected individuals or families who might otherwise not be able to attend the Conference. Scholarship awards are not intended to cover the entire cost of attending. They can cover the cost of hotel accommodations at the Conference hotel, CAMP CACNA1A, and conference registration fees. Travel expenses are not eligible and must be covered by the recipient. International applicants are welcome.

    Given limited funds, applicants are encouraged to apply for only the amount they need.

    Reimbursement for all eligible expenses will be made by check at the conclusion of the conference, after all receipts and the post-conference survey have been submitted. It may take 2-3 weeks to receive payment.

    Deadline - May 1, 2026. You will be notified of your application status on or before May 30th, 2026.

    Travel Scholarship Application

    Our funds are made possible through generous donations. In addition to the CF’s Travel scholarship, this guide highlights other possible funding opportunities.

Clinic Days at UT Health Houston

Do you want to be seen by a CACNA1A specialist while you're in Texas for the conference? The Multidisciplinary Center for CACNA1A-Related Disorders at UTHealth Houston, a premier facility that provides comprehensive care and innovative research for individuals affected by CACNA1A-related neurological and developmental disorders, is holding appointments specifically for those coming to Houston for the Conference. The physicians at UT HEALTH are committed to improving quality of life for both children and adults through personalized care, community support, and cutting-edge research. Dr. Thakur and Dr. Varnado will be able to see 6-8 patients for epilepsy and movement evaluations between Monday, July 6th, and Tuesday, July 7th. Dr. Wilson can accommodate four patients for neurodevelopmental evaluations on Tuesday, July 7th. Appointments are available on a first-come, first-served basis. To make an appointment, email PMDC@uth.tmc.edu and note that you are in town for the CACNA1A Conference and are interested in scheduling an appointment for the CACNA1A Clinic.

  • Cancellations with refunds for conference registration fees will be considered on a case-by-case basis before June 10, 2026. Cancellation requests received after this date are non-refundable, except for conference cancellation by the CACNA1A Foundation. If we need to cancel or reschedule the conference, all conference registration fees will be fully refunded.

    We understand the uncertainties around planning and want to be as flexible and understanding as possible, but we also have to fulfill our hotel contract obligations. Refunds will not be provided to conference no-shows who have not followed the cancellation process outlined above. Don't hesitate to contact info@cacna1a.org for any questions or more details.

  • Your personal data will be collected to manage your registration and participation in connection with the conference and will be shared with the CACNA1A Foundation and with vendors who are coordinating the logistics for the conference. Your personal information will not be shared in any other way, and the CACNA1A Foundation never sells your data.

  • CACNA1A Foundation intends to take photographs and videos of the Conference events for use in CACNA1A Foundation news and promotional materials in print, electronic, and other media, including the CACNA1A Foundation website, email distribution lists, and social media accounts. By participating in the Conference, you grant the CACNA1A Foundation the right to use any image, photograph, voice, or likeness, without limitation, in its news, promotional materials, and publicity efforts.

  • 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: the CACNA1A Foundation 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 CACNA1A Foundation events. Participants violating these rules may be asked to leave the Conference at the sole discretion of the CACNA1A Foundation.

    All attendees must follow Conference protocols while participating in Conference events and activities. Failure to follow all protocols in effect and required by the CACNA1A Foundation, the venue provider, and governing authorities during the Conference may result in registration cancellation without refund.

Conference Attendance Terms & Conditions

Frequently Asked Questions

  • Because CACNA1A affects each person differently, the 2026 Creating Connections CACNA1A Conference will bring together a wide range of attendees—adults, young adults, and children with CACNA1A; their parents, caregivers, grandparents, and siblings; healthcare professionals; researchers; and service providers. If you want to learn more about CACNA1A-related disorders and connect with others who share this journey, this is the place to be.

  • The Westin Oaks Hotel at the Galleria

    5011 Westheimer at Post Oak, Houston, Texas 77056

    +1 713-960-8100

    The hotel is directly connected to the Galleria, offering guests a variety of shopping and dining options.

  • Yes! There are a couple of options -

    George Bush Intercontinental Airport (IAH) is 27 miles from the hotel - approximately 40 minutes by car, depending on traffic.

    William P. Hobby Airport, also known as Houston Hobby (HOU), is 17 miles from the hotel - approximately 20 - 30 minutes by car, depending on traffic.

  • Depending upon which airport you fly into, the hotel is approximately a 30-40 minute ride by car from the airport.

    You can take a taxi, Lyft or Uber to/from the hotel and around the city. You don't need to rent a car for the conference unless you plan to explore the area.

    If you want to rent a car, there is a Hertz location on-site at the hotel.

  • There is world-class medical care in Houston. A local family in our CACNA1A Community recommends the following:

    1) For children - Texas Children’s Hospital - 6621 Fannin St, Houston

    2) For adults - Methodist-Texas Medical Center - 6565 Fannin St, Houston

  • Please use this booking link, or you may call reservations at 866-539-1208. If you call, say NO to sending a link and ask for an associate. Provide the Group Name (CACNA1A Creating Connections) and our Group Code (CACCACP). The hotel has agreed to honor the conference rate for 3 days before and after the conference.

    Room reservations and rates are available on a first-come basis until June 10, 2026, or until the room block is sold out, whichever comes first. After that date, reservation requests will be based on the hotel’s prevailing rate. Please book your rooms as soon as possible. All reservations must be guaranteed with a credit card.

    Cancellation Policy: You may cancel your reservation for no charge before 11:59 PM local hotel time 72 HOURS before arrival. Please note that the Hotel will assess a fee of 1 NIGHT ROOM AND TAX if you cancel after this deadline.

  • The Westin Oaks is offering a discounted group rate of $189.00 per night (excluding taxes, which are currently 17%) for a Traditional Room (2 King beds), an ADA Room (roll-in shower or tub), or an Executive Room (a little larger and has one King bed and a sofa bed).

    These rates will be available until June 1, 2026, or until the room block is sold out, whichever comes first. After that date, reservation requests will be based on the hotel’s prevailing rate. Please book your rooms as soon as possible. Please be sure to mention that you are with the CACNA1A Creating Connections e to receive the discounted rate

    All reservations must be confirmed with a credit card. Should one need to cancel their reservation, the deposit will be refunded if notice is received at least 72 hours before arrival and a cancellation number is obtained.

  • All hotel guests have access to the hotel’s amenities, which include an outdoor pool and a fitness room with weight machines, free weights, treadmills, and Peloton bikes.

  • Yes, connecting rooms are available upon request. After you make a reservation through the booking link, call Central Reservations to request connecting rooms. You will need to give them the confirmation number. You can also email us at info@cacna1a.org, and we can make sure the reservation is updated with connecting rooms.

  • The hotel has a limited number of rollaway beds and cribs (may be a pack-and-play), available on a first-come, first-served basis.

  • The hotel has a limited number of ADA rooms available to us, on a first-come, first-served basis. You must request an ADA room when you register. After selecting a guest room and adding your credit card information, the next screen says “Room Requests and Accessibility.’’ Click there to choose an ADA room and make any other requests.

    There are Mobility accessible rooms with either a tub or a roll-in shower.

    If you have any questions, please reach out to info@cacna1a.org for help.

  • All rooms have a small refrigerator. There is a shared microwave available in the Hotel Lobby.

  • No, there are no laundry machines on site. However, there is a laundromat located just a few minutes’ drive away (open 24/7) - Clutch City Laundry – Westheimer Rd

    For a fee, the hotel provides laundry service, with pickup at 9 am and drop-off by 7 pm the same day, Monday through Saturday.

  • Based on availability, the hotel has agreed to honor the conference rate for up to three days before and three days after the conference.

  • Yes. Complimentary self-parking is available at the hotel. Valet parking is also available for $58/night plus tax (Oversized vehicles are $61.00/night plus tax). However, the hotel has agreed to provide complimentary valet parking to anyone using a wheelchair, as self-parking is accessible only via a staircase.

  • On-site registration IS NOT available. All in-person attendees must pre-register online for the event by June 10, 2026, as that is our cutoff date for finalizing hotel arrangements.

  • The early bird rate ends on 2/28/26. We encourage you to take advantage of this discounted rate, which is $150 per adult and $50 per virtual attendee. Prices will increase on 3/1/26 and then again on 6/1/26. For additional pricing categories (children, young adults), please visit our registration page.

  • The registration fee includes access to all conference sessions, a welcome bag, printed materials, breakfast on Friday and Saturday, the opening reception on Friday evening, and the family dinner and dance on Saturday evening.

    Each attendee is responsible for their own hotel or lodging costs, travel expenses, and any fees for CACNA1A Camp, as these are not included in the registration fee.

    We are also planning a family activity on Thursday, July 9, for those arriving early. In addition, clinical assessments will take place throughout the day on Thursday as part of an important research initiative, and we hope you will consider participating.

  • Yes, the majority of the conference is hybrid and early-bird virtual registration is $50. Virtual registration includes access to all live-streamed presentations in the general session with the ability to ask questions virtually during the talks. It does not include access any break-out rooms.

  • The registration fee includes live-stream access to all of the conference general educational sessions, the ability to ask questions virtually during these sessions and view any virtual exhibit booths. It does not include virtual participation in social events or breakout discussions.

  • The CACNA1A Foundation cannot adjust fees for days not attended. The registration fee remains the same whether you attend the conference for all or part of it.

  • Yes, all educational sessions of the Conference will be recorded and shared with attendees shortly after the Conference ends. The videos will not be available for free until a later date. However, you can pay $50 for early access.

  • Everyone attending, even children, needs to register. People who do not need to register include someone, for example, who is coming to babysit your child. An individual does NOT need to register if they WILL NOT:

    i. Attend any sessions;

    ii. Eat conference-planned group meals; and

    iii. Attend any evening sessions.

  • The registration fee covers breakfast and the welcome reception on Friday, and breakfast and dinner on Saturday. A pizza party will be provided for the children in Camp CACNA1A on Friday evening. The welcome reception on Friday evening is for adults only and will include light appetizers and drinks. Everyone is invited to join us for dinner and dancing on Saturday evening. This party is a highlight of the weekend. Please note that the hotel is attached to the Galleria Mall, and there are a variety of options there for lunch. There is also a restaurant in the hotel. - https://www.simon.com/mall/the-galleria/dining

  • Refunds for conference registration fees will be considered, but not guaranteed, if you cancel before June 10, 2026. Cancellation requests received after June 10, 2026, are non-refundable, with the exception of conference cancellation by the CACNA1A Foundation. In the event we need to cancel or reschedule the conference, all conference registration fees will be fully refunded.

    Refunds will not be provided to conference no-shows.

  • The CACNA1A Foundation will be holding clinical assessments for research purposes throughout the day on Thursday, July 9th. We hope you will attend this important initiative.

    There will also be a social gathering for families during the day, so everyone can get to know each other (for example, at the pool). If you’d like to join other families for dinner, let us know, and we will share your contact information so you can make arrangements.

    The conference kicks off with sessions beginning Friday morning, July 10th, at 8:00 am. Breakfast will be available beginning at 7:00 am.

  • NOTE: As of 4/6/26, all CACNA1A Foundation scholarships have now been awarded and the application is closed. If additional funding becomes available, we will reopen applications. The CACNA1A Foundation has a limited number of partial scholarships available to assist CACNA1A-affected individuals and families in attending our Conference. A scholarship application must be submitted by May 1, 2026. Please note that the CACNA1A Foundation can provide partial assistance with hotel accommodations, Camp CACNA1A, and conference registration fees only. Travel expenses are not eligible and must be covered by the recipient. A maximum of $500 per family will be awarded. Please see the section above for the application.

  • Children under 12 years are not permitted in conference sessions. You are welcome to bring your infant with you to the sessions; however, please respect others in the group by taking your infant out if they are causing a distraction. We are live-streaming and recording sessions to share with families and professionals who are unable to attend in person. We recommend that you sign up children to participate in Camp CACNA1A during sessions or bring a caregiver who can stay with them at the hotel.

  • Yes, we have hired Corporate Kids Events to run Camp CACNA1A. See the section above to learn more.

  • Yes, all children are invited to Camp CACNA1A. Space is limited and availability is on a first-come, first-served basis.

  • We are once again using Corporate Kids to run Camp CACNA1A. Please visit their website for more information. In addition to rave reviews from kids and parents alike at our 2022 and 2024 conferences, they are highly recommended by many other rare disease organizations whose constituencies include children with special healthcare needs, including epilepsy. Some of these organizations include The Brain Recovery Project, the 17q12 Foundation, the Charge Syndrome Foundation, the Tuberous Sclerosis Association, PRISMS (Parents & Researchers Interested in Smith-Magenis Syndrome), and the Duplication 15q Alliance.

  • There is no set dress code for the sessions. We recommend wearing layers as the conference spaces could get stuffy or chilly. We recommend dressy casual attire for the Saturday evening family dinner dance.

  • You can find the registration area in the conference area of the hotel (you will see a sign directing you there). You can check in and pick up your registration packet at any of these times:

    • Thursday, July 9, from 1:00 pm to 5:00 pm

    • Friday, July 10, from 7:00 am to 4:00 pm.

    • Saturday, July 11, from 7:00 am to 4:00 pm.

    Please be sure to give yourself enough time to check in and pick up your conference packet and badge before the first session. We suggest you wear your badge for entry into the sessions and the evening social events. If your travel plans affect your ability to arrive during the above windows, please let us know, and we will make alternate arrangements.

  • Welcome to Houston! You’ll find a vibrant, diverse city filled with world-class food, rich cultural experiences, and unique attractions. From exploring the NASA Johnson Space Center to wandering through the Museum District’s many galleries and exhibits to Chinatown and world-famous barbecue and Tex-Mex, there’s something for every type of tourist. The city also offers beautiful parks and outdoor activities, but it will be HOT and humid in July. Whether you’re a foodie, an adventurer, or a culture lover, Houston offers a memorable, welcoming experience.

    NASA/Space Center Houston

    Meow Wolf

    Downtown Aquarium

    Houston Zoo

    Galveston Island – Moody Gardens

    Houston Arboretum and Nature Center

    Ship channel boat tour

    Museum of Fine Arts

    Children’s Museum of Houston

    Health Museum

    1940 Air Terminal Museum

    Houston Museum of Natural Science/Cockrell Butterfly Center

    The Menil Collection

    Houston Astros Baseball

    Houston Dynamos Soccer

    Numerous theaters

    Shopping - the Galleria

    Central Market

    Great Tex-Mex food, Barbecue, Chinese in Chinatown, Buccees for Texas souvenirs,

     

  • Please reach out to info@cacna1a.org with any other questions not answered here. We are here to help and hope you will join us!

This conference has been made possible by generous funding from the following organizations and families. We are grateful for their support!

Support our Conference - View our Sponsorship Opportunities
Become a Family Sponsor or Friend of the Foundation