Coffin-Siris Syndrome Foundation
Annual Conference

Proximity to Airport and Transportation: The Drury Plaza Hotel – Disney Springs is accessible from Orlando International Airport (MCO) via ride share/taxi, car rental, and the MEARS Bus. The airport is approximately 17 miles from the Drury (an approximately 25 minute drive).  

Room Block: We have one room block at the Drury Plaza Hotel – Disney Springs. They offer Double Queen Rooms, as well as King Rooms sleeping up to 6 and 4, respectively. Room rates are set at $179/night. Room block rates are valid through June 23, 2026, and will be honored 3 days +/- event dates. All rooms have small fridges. (The Foundation should have access to a freezer if this is medically necessary). If you anticipate attending, please book a room as soon as possible. There is no fee for cancelling down the road. You can call to make a reservation:  (407) 560-6111 with Group Code 10156448.

Amenities: The Drury Plaza Hotel – Disney Springs offers onsite, free breakfast; unlimited coffee and tea through the day; popcorn and soda in the afternoon; 3 free happy hour drinks and free “Kickback” dinner daily. There is also an onsite bar, as well as a poolside restaurant. The hotel also has a small convenience store, Pizza Hut personal pizzas, and an arcade. Deliveries (Amazon, Instacart, DoorDash, etc.) are all easy and available. There is a resort style outdoor saltwater pool, hot tub, and splash pad onsite. The Drury offers a free shuttle to all Disney Theme Parks and is an Official Walt Disney hotel.

Meals: Breakfast and dinner will be provided daily for hotel guests at the Drury Plaza Hotel – Disney Springs. Lunch will be on your own, with several options nearby (both within the hotel and walking distance). The hotel was intentionally selected for the ample community gathering space and ease of family meal planning for a large group like ours. 

Parking: Parking for all our guests has been discounted to $15/day.

Important: What’s New

For those who have attended our conferences before, we will be doing things a little differently this year. We plan on having fewer speakers, focusing primarily on research and medical updates, as well as more casual and personal community sessions. Our overall focus will bend towards family and connection. 

Due to the reduction of speakers and the change from a typical long day (half day chunks for the win!), venue space/layout, and increased community opportunities in the area, we will not be offering childcare this year. We intend to offer multiple sessions of presentations, as well as stream sessions (in an adjacent ballroom with kids activities available) and have recordings of sessions available to all who register. This will allow families to tag-team and attend sessions of interest. 

Additionally, if you would like to bring a caregiver (babysitter, nanny, respite worker, home health aide, or grandparent to care for your loved one during the conference), please contact us conference@coffinsiris.org to waive their registration fee (limit one caregiver waiver per individual with CSS). If you are attending as a single parent, you are also welcome to reach out to us about the support you need and we will do our best to help connect you with resources. 

As always, we encourage you to bring your kids with CSS and their siblings to hang out with us and participate in all parts of the conference. There will be plenty of space for you to spread out (wait until you see the pool!) and make yourself comfortable. Inclusion is our priority… and we promise we’ll make this big family thing work!

Disney Tickets: You can purchase your tickets to Disney with our group discount via our micro site. There are options for single day, multi-day, and partial day tickets. 

You do not need to buy all your Parks tickets in advance, although you certainly can. You can buy day-of, as well as half-day passes at a discount. DAS passes (disability access service) will require the advance purchase of a ticket for the individual with a disability. We will share much more information about this process in the months to come. You will receive a Disney gift card upon arrival to the conference that you can use towards your tickets or anywhere in the parks. 

Cancellation & Refund Policy

All registration fees are non-refundable. The only exceptions will be based on medical emergencies. Any refund requests must be made asap and emailed to conference@coffinsiris.org. There are no onsite refunds. Those who do not cancel before the conference, and do not attend, forfeit all registration and related fees.

Registration Details Conference registration is currently $125 per person. This early bird rate is good until May 10, 2026. Please register each person in your family who will attend. Registration includes:

• All conference content, materials, and a swag bag with a T-shirt
• Seizure First Aid Certification (on completion of an optional class)
• Dad’s Night activity
• Mom’s Night activity
• Teen/Adults with CSS event
• Discounted Theme Park Tickets specific for our group
• Free Daily Breakfast and “Kickback” Dinner/Drinks included 
• $50 Disney Gift Card per person in your registration: you may use this card at any of the parks or anywhere on Disney Properties (including Disney Springs, admission to parks, food, gift shops, etc.)
• 10% off at Disney Springs with your conference badge (food, shopping, etc.).
• Subsidized cost for Character Breakfast, should you sign up. First come, first serve (availability is limited and details to come)
• More MAGIC and CHAOS and BEAUTIFUL COMMUNITY than you knew you could squeeze into a long weekend!

After 05/10/26, the cost will increase to $150/pp. After 6/10/26, the cost of registration increases to $175/pp. Please understand how much early registration helps our planning! We do anticipate this event will sell out. Registration is first-come, first serve, so we encourage you to register as soon as possible.

The CSS Foundation subsidizes approximately 2/3 of the actual costs for all attendees, so if your family has the financial means to contribute more, please consider making an additional donation as indicated on your registration form. We are grateful for your support. 

We do offer a needs-based scholarship to cover the registration fee. This is based on an honor system, and does not cover travel costs. Please only apply for a scholarship if you are certain you will attend the conference. Please email conference@coffinsiris.org to apply or to request help with fundraising ideas. 

NOTE : WHEN CHECKING OUT, ZEFFY WILL AUTOMATICALLY ADD A “TIP”, PLEASE FEEL FREE TO $0 THIS OUT AS WE CANNOT REFUND THIS CHARGE

In the order summary, change the line “Support the 100% free platform we use!” to “Other” and enter $0 in the contribution.

Big Picture Schedule Exact events subject to change… but know that we will start Thursday with sessions and content you won’t want to miss! Our full detailed schedule will be announced closer to the event, but here’s what to expect:

• Wednesday, July 22: Start the party early! Come for a volunteer job, come to connect, or come to start the pool party early! (Your CSS Foundation Conference organizers will be there and can’t wait to see you!) Hotel check-in starts at 4 p.m. … we will hit the ground running Thursday!
• Thursday, July 23: In the morning, connect with the CSS Foundation at registration, pick up your swag, and enjoy a CSS Pool Party. In the afternoon, join us for opening sessions, including a Q&A with Dr. Vergano, a connection session for first-time attendees and those with a new diagnosis, and meet with our family ambassadors. In the evening, we will host a CSS teen/adult activity (led by our Self-Advocate Advisory Board), and a dad/father figure connection event.
• Friday, July 24: Conference sessions throughout the day, with a break for lunch, and in the evening, a mom/mother figure connect event, and an event for the whole family at Drury.
• Saturday, July 25: Conference sessions in the morning. In the afternoon, an optional Disney character brunch (with meal/tickets subsidized and purchased separate from registration baseline cost). Saturday afternoon and evening all are free to play at the parks, with a family movie offered in the evening at the Drury. (Not hitting the parks? No worries! We’ll have plenty of activity suggestions nearby!)
• Sunday, July 26: Free to head to the parks, to the pool, or to nearby hot spots (read: HOT)! We hope to offer a family pool party, social connection groups on the terrace, and possible swim lessons. If you need help connecting with a group… just let us know! 

You can pre-order additional T-shirts, onesies, and tanks on our online store, to pick up in person at the conference.