photo from the 2022 conference

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

2024 Conference Details - Bethesda Marriott, Bethesda, Maryland

  • 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 enroll in the CACNA1A Foundation’s Natural History Study, Rare-X Data Collection Program, Ciitizen and Biobanking Program;

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

    • Opportunities to meet in a one-on-one setting with experienced (i) genetic counselors Laina Lusk (CHOP) and a genetic counselor from the Chung Lab (Boston Children’s Hospital) to review your genetic report and answer your questions and (ii) 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

    • All meals and a dance party on Saturday night.


    We hope to see you there! If you cannot attend in person, the conference is also being offered virtually.

  • The agenda is still being developed, so please check back regularly for updates.

    AGENDA

    Thursday, July 18th

    Family Fun Day - There will be a pre-conference Family Fun Day to give our families an opportunity to meet each other in person and have a great day together. More specifics on the activities that are being planned will be coming soon.

    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 the day before the conference officially starts to discuss physical therapy strategies and adaptive equipment. Advance signup will be required, and details will be coming soon.

    Research Roundtable (closed scientific meeting by invite only) - This annual meeting brings together our CACNA1A Research Network to share unpublished work, participate in discussions regarding pathways toward effective treatments, and provide opportunities to deepen collaborations and develop new ones.

    Friday, July 19th - 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. In the afternoon, there will be a block of time for clinical assessments by CACNA1A experts. The day will conclude with a reception for the adults and a movie night for the children.

    Saturday, July 20th - Conference Sessions on Family Support Topics - These sessions will feature information and resources to help families navigate the challenges of CACNA1A-related diseases across many topics and provide opportunities to strengthen connection and support across the community. The day will end with a family dinner & dance party.

  • All-inclusive conference registration fees cover educational sessions, conference materials, meals during the conference, resource room access, 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 1, 2024, Early Bird deadline. If you have any questions, please email info@cacna1a.org.

    Early-Bird Registration by February 29, 2024

    In-Person Pass for Adult
    $100

    In-Person Pass for Child age 12 and under (includes CAMP CACNA1A)
    $75

    In-Person Pass for Child 13 to 18 years of age (includes CAMP CACNA1A) $100.00

    In-Person Pass for Child age 12 and under (does not include CAMP CACNA1A) $25

    In-Person Pass for Child 13 to 18 years of age (does not include CAMP CACNA1A) $50

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

    Registration from March 1, 2024 - May 31, 2024

    In-Person Pass for Adult
    $200

    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) $200.00

    In-Person Pass for Child age 12 and under (does not include CAMP CACNA1A) $50

    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
    $125

    Late Registration - June 1, 2024 - July 20, 2024

  • The CACNA1A Foundation has 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 19th, from 8:00 am to 12:00 pm, 1:00 pm to 5:00 pm, and 6:00 pm to 8:00 pm and on Saturday, July 20th, from 8:00 am to 12:00 pm and 1:00 pm to 4:00 pm. Registration for each CAMP CACNA1A attendee is $100 (under 12)/$125 (over 12), regardless of how many total hours the child will attend the Camp. The cost of registration increases to $150 on March 1st (through June 15th). There is a limit of 50 children total (including those with CACNA1A and their siblings), so availability is on a first come basis. **As of 4/8, there are only 8 spots left!

    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.

  • The CACNA1A Foundation 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.

    As of 3/20/24, we have received more applications than we have funding for. If you’d like to be put on a waitlist, please fill out the application, and we will keep you informed if we receive additional funding.

    Travel Scholarship Application

Clinic Days at Kennedy Krieger

Do you want to be seen by a CACNA1A specialist while you're in Maryland for the conference? Dr. Kristin Barañano, a pediatric neurologist at Kennedy Krieger Institute (KKI)/Johns Hopkins Medicine who is leading the development of the CACNA1A Clinical Care Guidelines, is blocking her clinic days before and after the conference for CACNA1A families. If you want to make an appointment on Wednesday, July 17th, or Monday, July 22nd, at KKI in Baltimore, please call (443-932-9400) or fill out the online form to start the intake process. Appointments are available on a first-come, first-serve basis. Please specify that you would like to be seen in the CACNA1A Clinic by Dr. Barañano. All visits will be billed to your insurance, and charges for services provided will be sent to you by KKI in advance of the appointment. 

Conference Attendance Terms & Conditions

  • The health and safety of all attendees at the 2024 Creating Connections CACNA1A Conference remains our top priority. Please visit https://www.montgomerycountymd.gov/covid19/ for any current state of MD or Montgomery County local orders and updated information about COVID-19.

    An inherent risk of exposure to COVID-19 exists in any public place where people are present. COVID-19 is a highly contagious disease that can lead to severe illness and death. According to the CDC, senior citizens and individuals with underlying medical conditions are especially vulnerable. By attending the 2024 Creating Connections CACNA1A Conference, you voluntarily assume all risks related to exposure to COVID-19. We strongly encourage attendees to be vaccinated and receive their booster shots when applicable before attending the conference. Help us keep each other healthy.

    We also strongly encourage individuals to be tested for COVID-19 before traveling to the conference. Individuals who test positive should stay home and cancel their registration. Registration fees will be fully refunded.

    For questions regarding these policies, don't hesitate to contact us at info@cacna1a.org.

  • Cancellations with refunds for conference registration fees will be considered on a case-by-case basis before June 19, 2024. 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 for conference no-shows who have not gone through the above cancellation process. 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.

Frequently Asked Questions

  • Because CACNA1A affects each person differently, the 2024 Creating Connections CACNA1A Conference will attract many different constituencies: adults, young adults and children with CACNA1A and their parents, caregivers, grandparents and siblings; healthcare professionals; researchers; and service providers.

  • Bethesda Marriott

    5151 Pooks Hill Road, Bethesda, Maryland 20814 USA

  • Yes! There are a couple of options - Washington Dulles International Airport (IAD) is 25 miles from the hotel.

    Ronald Reagan Washington National Airport (DCA) is 21 miles from the hotel.

    Baltimore/Washington International Thurgood Marshall Airport (BWI) is 36 miles away from the hotel.

  • 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. There is no need to rent a car for the conference unless you plan to explore the area.

    If you choose to take Amtrak to Union Station in Washington DC, the hotel is approximately a 35-minute drive.

    The hotel is located 2 miles from downtown Bethesda and offers complimentary shuttle service to the downtown district and other local destinations, including the National Institute of Health, Montgomery Mall, and the Metro's Red Line, which provides continuous service to downtown Washington, D.C.

  • 1) Suburban Hospital - Associated with Johns Hopkins Medicine, Suburban Hospital has a certified stroke center and level II trauma center. It is 1.8 miles from the hotel (approx a 6-minute drive).

    2) Sibley Memorial Hospital - Also a part of Johns Hopkins Medicine, Sibley offers surgical, obstetric, psychiatric, oncologic, and skilled nursing inpatient services, as well as a 24-hour state-of-the-art Emergency Department. Located in Washington DC, it is 10 miles (approximately a 20-minute drive) from the hotel.

    3) Children’s National - Children's National, located in Washington DC, is a pediatric acute care children's hospital. It is ranked among the best pediatric hospitals in the United States by U.S. News & World Report. It is located 11 miles (approximately a 35-minute drive) from the hotel.

    4) Inova Children’s - Inova Children’s is an award-winning, full-service children’s hospital devoted to the healthcare of infants, children, and adolescents in the Northern Virginia area. It is 17 miles (approximately a 25-minute drive) from the hotel.

  • Please use the booking link on our website, or you may call reservations at 1-888-236-2427 or 1-301-897-9400 (option 1) and mention the Creating Connections Family Conference. 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 19, 2024, 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.

    Should one need to cancel their reservation, the deposit will be refunded if notice is received at least three (3) days prior to arrival and a cancellation number is obtained.

  • The Bethesda Marriot is offering a discounted group rate of $116.00 per night (excluding taxes, which are currently 13%) for a Standard King Room or an ADA King Room (roll-in shower) and $136.00 per night for a Standard Double-Double Room or an ADA Double- Double (with a tub). A limited number of King Suites are available at a discounted group rate of $216.00 per night (excluding taxes).

    These rates will be available until June 19, 2024, 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 Annual Conference to receive the discounted rate (group name: Creating Connections Family Conference)

    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 three (3) days prior to 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.

  • The hotel has a limited number of rollaway beds and Pack-and-Play portable cribs, which are available on a first-come basis. All King Suites ($216) include a fold-out couch (full-sized mattress).

  • The hotel has a limited number of ADA rooms. We have reserved 2 Standard ADA Kings with roll-in showers, 1 Executive ADA King with a roll-in shower, and 3 Standard ADA Double-Double rooms with bathtubs as part of our room block. These rooms can be reserved on a first-come basis.

  • All rooms have a small refrigerator in them. There is a microwave in the lobby available for use.

  • Yes, there are coin laundry machines on site.

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

  • Parking is available on-site at a discounted rate of $9.50 per car per night.

  • Onsite registration IS NOT available. All in-person attendees must pre-register online for the event by June 19, 2024, as that is our cutoff date for finalizing arrangements with the hotel.

  • Conference registration is $100 per adult and $50 per virtual attendee through February 29, 2024. The registration increases to $200 per adult and $125 per virtual attendee after March 1, 2024. On June 1st, prices will increase once again, so we encourage you to register as soon as possible. For pricing for children and young adults, please visit the registration page.

  • The registration fee includes access to all of the conference sessions, a welcome bag, printed materials, access to the resource room, breakfast and lunch both days, access to the opening reception on Friday evening, access to the family dinner and dance on Saturday evening; Each attendee is responsible for their hotel room or lodging expenses, travel expenses, and fees for CACNA1A Camp; these are not part of the registration fee. We are in the process of organizing a family fun day on Thursday, July 18th, for those who plan to come to the area early. There will be an extra fee for this event if you’d like to attend. Information will be forthcoming.

  • 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 educational sessions, the ability to ask questions virtually during the 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 publicly available.

  • 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.

  • CACNA1A community members can explore ways to participate in research, including the CACNA1A Foundation Biorepository, NIGMS Repository at the NIH, CACNA1A Natural History Study, and the Rare-X Data Collection Program. After proper consent, staff from a mobile phlebotomy company will be on hand to collect blood samples from individuals with a CACNA1A diagnosis. We are planning to provide a variety of clinical intakes and that information will be updated as it is finalized.

  • The registration fee covers breakfast, lunch and the welcome reception on Friday and breakfast, lunch 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.

  • Cancellations with refunds for conference registration fees will be considered on a case-by-case basis before June 19, 2024. Cancellation requests received after June 20, 2024, are non-refundable, with the exception of COVID-19-related illnesses and conference cancellation by the CACNA1A Foundation. Individuals who test positive within a 5-day window prior to the start of the conference should stay home and cancel their registration. Registration fees will be fully refunded. In the event we need to cancel or reschedule the conference, all conference registration fees will also be fully refunded.

    Refunds will not be provided for conference no-shows who have not gone through the above cancellation process. Please contact info@cacna1a.org for any questions or more details.

  • The CACNA1A Foundation will be hosting a pre-conference Family Fun Day (to be decided) on Thursday, July 18th. There may be an additional fee for this event.

    Physical therapist Theresa Spong will be available for one-on-one 30-minute PT consultations with individuals on Thursday, July 18th from 3:00 pm - 5:00 pm if you sign up in advance. If you would like to attend any of the pre-conference activities, we recommend arriving on Wednesday, July 17th, or the morning of Thursday, July 18th.

    The conference kicks off with sessions beginning Friday morning, July 19th, at 8:00 am. Breakfast will be available beginning at 7:00 am.

  • The CACNA1A Foundation has a limited number of partial scholarships available to assist CACNA1A-affected individuals and families in attending our Conference in Bethesda, Maryland. A scholarship application must be submitted by April 15, 2024. Please note that the CACNA1A Foundation will be able to provide partial assistance in covering the cost of 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.

  • 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.

  • Yes, all children are invited to Camp CACNA1A.

  • 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 Conference, they come highly recommended by many other rare disease organizations whose constituency includes children with special healthcare needs, including epilepsy. Some of these organizations include The Brain Recovery Project, the 17q12 Foundation, Charge Syndrome Foundation, The Tuberous Sclerosis Association, PRISMS (Parents & Researchers Interested in Smith-Magenis Syndrome), and 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 Lobby of the hotel. You can check in and pick up your registration packet at any of these times:

    • Thursday, July 18, from 9:00 am to 11:00 am or 4:00 pm to 6:00 pm.

    • Friday, July 19, from 7:00 am to 8:30 am.

    • Saturday, July 20, from 7:00 am to 8:30 am.

    Be sure to give yourself enough time to check in and pick up your conference packet and badge before attending your 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.

  • Bethesda, Maryland, is 30 minutes northwest of Washington DC

    For information about visiting DC with your children, we suggest you read the following blog posts:

    1) https://adayinourshoes.com/visiting-washington-dc-with-kids-and-special-needs/

    2) https://www.travelmuse.com/articles/special-needs/accessible-washington-dc

    The most popular attractions in DC for families are:

    1. National Zoo

    2. National Museum of American History

    3. International Spy Museum

    4. Nationals Park (Washington Nationals baseball stadium)

    5. Georgetown Waterfront Park (rent canoes/kayaks)

    6. Hirshhorn Museum and Sculpture Garden

    7. National Air and Space Museum

    8. National Mall (Jefferson Memorial, Washington Monument, Lincoln Memorial, etc.)

    9. Capital Hill (US Capital, Library of Congress, Supreme Court)

    10. White House (Public tour requests are scheduled through your Member of Congress and their Congressional Tour Coordinator.)

    11. Explore Georgetown

    12. Rock Creek Park

  • 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. We are grateful for their support!

Gold Sponsor

Gold Sponsor