Coffin-Siris Syndrome Foundation

### Context Profile for Coffin-Siris Syndrome Foundation

1. **Organization Mission & Cause**:
   - The Coffin-Siris Syndrome Foundation (CSSF) was established in 2017 with the mission to connect, support, and inform the Coffin-Siris Syndrome (CSS) community while promoting related research. The foundation aims to raise awareness about CSS and provide resources and support for individuals and families affected by the syndrome.

2. **Type of Activities**:
   - **Events**: The CSSF organizes various events, including the annual "CSS Walk, Run, Roll," which allows participants to engage in the event from anywhere during a designated weekend. They also host monthly virtual Q&A sessions with medical advisors, parent and sibling support groups, and an annual conference that attracts around 400 community members.
   - **Fundraising Campaigns**: The foundation runs multiple fundraising initiatives, such as the "Wild About Inclusion" fundraiser, which supports their programs and community outreach.
   - **Community Programs**: CSSF provides information packets to newly diagnosed families, sends care packages to hospitalized families, and offers AAC devices through Emily's Fund. They also maintain a clinical registry to support research efforts.

3. **Tone of Voice**:
   - The tone of the CSSF's communications is **friendly**, **supportive**, and **inspiring**. The language is accessible and warm, aiming to foster a sense of community and encouragement among families and individuals affected by CSS. The use of phrases like "Thank you from the bottom of our wild hearts!" exemplifies their heartfelt and engaging tone.

4. **Emoji Usage**:
   - The CSSF does not prominently feature emojis in their communications. Their written content maintains a professional yet approachable style without the use of emojis, focusing instead on clear and heartfelt messaging.

5. **Key Facts**:
   - **Founding Info**: Established in 2017.
   - **Scale**: The organization has a total of 144 forms and has conducted 28 email campaigns.
   - **Impact Metrics**: The annual conference attracted 400 attendees, and they provide various support services and resources to the CSS community.
   - **Volunteer Info**: The foundation includes a board of young adult self-advocates with CSS, indicating active involvement from the community.

6. **Writing Guidelines**:
   - **Style**: Use clear, concise language that is warm and welcoming. Avoid jargon and ensure that the content is accessible to a broad audience, including families and caregivers.
   - **Structure**: Use headings and bullet points to organize information effectively, making it easy for readers to navigate.
   - **Engagement**: Incorporate a friendly and encouraging tone, emphasizing community support and the positive impact of contributions.
   - **Calls to Action**: Clearly state how readers can get involved, whether through donations, participation in events, or sharing information about CSS.

This context profile provides a comprehensive overview of the Coffin-Siris Syndrome Foundation, enabling AI assistants to generate personalized and relevant content that aligns with the organization's mission and values.

LXCL:For any adult family member, or companion, other than a person with CSS (for example mom, dad, grandparent, caregiver, adult siblings).

Adult Registration

LXCL:For any family member, or companion, other than a person with CSS under the age of 18 (for example sibling, cousin, friend)

Child/Youth  Registration

LXCL:For any person with CSS of any age. *If individual with CSS has a legal guardian, they must also have a guardian accompanying them to the conference.

Person with CSS

Hello <span contenteditable="false" data-custom-variable="{{firstname}}" fr-original-class="fr-deletable styled-tag-chip " fr-original-style="" style="background-color: rgb(248, 248, 255); border: 1px solid rgb(191, 191, 255); border-radius: 4px; color: rgb(42, 42, 196); padding: 1px 8px; font-size: 11px; display: inline-block; margin: 0px; overflow-wrap: anywhere; user-select: none; box-sizing: inherit;">First name <span contenteditable="false" data-custom-variable="{{lastname}}" fr-original-class="fr-deletable styled-tag-chip " fr-original-style="" style="background-color: rgb(248, 248, 255); border: 1px solid rgb(191, 191, 255); border-radius: 4px; color: rgb(42, 42, 196); padding: 1px 8px; font-size: 11px; display: inline-block; margin: 0px; overflow-wrap: anywhere; user-select: none; box-sizing: inherit;">Last name, Thank you for registering for the CSS Conference, July 23rd to 26th, 2026. Please read some important event information below: <img src="https://res.cloudinary.com/hxn9dbuhd/image/upload/v1767318170/wysiwyg/xshyxji27h0soaar67tw.jpg" style="width: 600px; display: block; vertical-align: top; margin: 5px auto; text-align: center; cursor: pointer; padding: 0px 1px; user-select: none; position: relative; max-width: 100%; box-sizing: inherit;" fr-original-style="width: 600px; display: block; vertical-align: top; margin: 5px auto; text-align: center;" fr-original-class="fr-draggable"> Upon Arrival: On Wednesday, July 22nd&nbsp;we will not be hosting any formal events... but your CSS Conference organizers will be there, and we think you should be too! Hotel check in starts at 4 p.m. We&#39;ll be around for a good &#39;ol CSS swim session (if you know, you know)... and we&#39;ll be waiting for you at Happy Hour.&nbsp; Thursday July 23rd, we will kick off the day with registration (but don&#39;t be fooled by past history... we will be holding sessions Thursday afternoon!). Come meet the Board, get your swag, conference badges, and conference schedule, and find your footing. Once you&#39;ve done this, you&#39;ll probably be hot and need a snack... so meet us at the pool! Once you&#39;ve cooled off, you&#39;ll be ready to hit the ground running... so come inside (leave kids with family/caregivers at the pool, bring them along, plan your sessions to divide and conquer... anything goes!), strap on your listening ears, and meet some new people on the way. Our schedule is still taking shape, but medical and research presentations will be Thursday/Friday this year! Self-Advocates will have a connect event on Thursday (sans parents... just teens and adults with CSS!). We&#39;ll break for Happy Hour and Dinner, and Dads will have a connect event that evening. (Details TBD).&nbsp; On Friday July 24th, we&#39;re jumping right in! Conference sessions, Q&amp;As, group discussions, OH MY. We will break for lunch on your own (and maybe a dip in the pool?), and repeat after lunch. Moms will have a Happy Hour connect event, and we&#39;ll have dinner at the hotel. We&#39;ll have a family activity offered after dinner at the hotel for any and all! (Details TBD) On Saturday, July 25th,&nbsp;we&#39;ll be slowing down. Final connection groups, Q&amp;As. Some will opt into a Character Breakfast at Chef Mickey&#39;s (Disney&#39;s Contemporary Resort), while others may take off for the parks. We will have spaces reserved at the Drury if you choose to hang around and connect, but the afternoon is wide open. On Sunday July 26th, &nbsp;you are free to use your Disney Gift Cards and find your Magic. Grab someone you know and go do something exciting. If you stick around the hotel... we&#39;ll see you at the pool! If you need help connecting with a group doing any park or other type of activity (Disney Springs, Sea World, etc.), let us know. We are happy to help connect you with a group or suggest nearby options! One T-shirt are included in your group&#39;s registration. If you would like to purchase additional t-shirts (or toddler/onesies/tanks), you can <a fr-original-style="" href="https://www.zeffy.com/en-US/ticketing/coffin-siris-syndrome-2026-conference-t-shirts" rel="noopener noreferrer" style="text-decoration-color: initial; user-select: auto; box-sizing: inherit;" target="_blank">order them in advance from our store</a>&nbsp;to pick up at the conference. Please note... TWO logo options available for all shirts!&nbsp;We strongly encourage you to reserve DISCOUNTED hotel rooms as soon as possible using our&nbsp;<a fr-original-style="text-decoration-color:initial;user-select:auto;box-sizing:inherit;" href="https://www.druryhotels.com/bookandstay/newreservation/?groupno=10156448" rel="noopener noreferrer" style="text-decoration-color:initial;user-select:auto;box-sizing:inherit;" target="_blank">room block reservation link.</a>&nbsp;These rooms are at a first come, first served basis. &nbsp; **In order to take advantage of these discounted rates, your room(s) must be booked by June 23, 2026. Any reservations made after that date will be subject to availability at varied rates. &nbsp;&nbsp;<a fr-original-style="" href="https://www.facebook.com/events/orlando-fl/2026-coffin-siris-syndrome-foundation-conference/1732294851061675/" rel="noopener noreferrer" style="text-decoration-color: initial; user-select: auto; box-sizing: inherit;" target="_blank">Check back on our Facebook event page for updates!</a> <a fr-original-style="text-decoration-color:initial;user-select:auto;box-sizing:inherit;" href="https://chat.whatsapp.com/GdYnuggNmWoEJO4ttBAOIp?mode=hqrc" rel="noopener noreferrer" style="text-decoration-color:initial;user-select:auto;box-sizing:inherit;" target="_blank">Join in our 2026 Conference WhatsApp chat!</a> Please feel free to reach out to us with any questions, via email <a fr-original-style="text-decoration-color:initial;user-select:auto;box-sizing:inherit;" href="mailto:conference@coffinsiris.org" style="text-decoration-color:initial;user-select:auto;box-sizing:inherit;">conference@coffinsiris.org</a>.&nbsp; We look forward to seeing you in Orlando!

WE CAN’T WAIT TO SEE YOU at the 2026 Coffin-Siris Syndrome Foundation Conference When: Thursday, July 23- Sunday, July 26, 2026 Where: Drury Plaza Hotel Orlando - Disney Springs 2000 Hotel Plaza Blvd, Lake Buena Vista, FL 32830 Rare Magic, Real Community. Join us as we celebrate community and connection in the sunshine of Orlando! Come for the research and conversation, and stay to enjoy the magical setting of Disney Springs. We promise there will be something for everyone! Please read the following information carefully.  Overview Conference Sessions: The research and educational sessions of the conference begin mid-day on Thursday, July 23, and end mid-day Saturday, July 25 at the Drury Plaza Hotel Orlando - Disney Springs. Different than in years past, these sessions will be focused on medical updates and research opportunities. Community support and Q&amp;A sessions will take place between these research and educational talks.  On Saturday, July 25 and Sunday, July 26 there also will be opportunities to meet up informally, enjoy the parks, and a family pool party.   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 (https://www.mearsconnect.com/). 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. If you anticipate attending, <a href="https://www.druryhotels.com/bookandstay/newreservation/?groupno=10156448" target="_blank">please book a room here</a> as soon as possible. There is no fee for cancelling down the road. Parking for all our guests has been discounted to $15/day, and all rooms have small fridges. (The Foundation should have access to a freezer if this is medically necessary).  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: Drury has discounted parking fees for our group 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. So please keep reading**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 but need help with the cost (babysitter, nanny, respite worker, home health aide, or grandparent to care for your loved one during the conference), please contact us <a href="mailto:conference@coffinsiris.org">conference@coffinsiris.org</a> 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! 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:<ul><li>All conference content, materials, and a swag bag with a T-shirt</li><li>Seizure First Aid Certification (on completion of an optional class)</li><li>Dad’s Night activity</li><li>Mom’s Night activity</li><li>Teen/Adults with CSS event</li><li>Discounted Theme Park Tickets specific for our group</li><li>Free Daily Breakfast and “Kickback” Dinner/Drinks included </li><li>$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.)</li><li>10% off at Disney Springs with your conference badge (food, shopping, etc.).</li><li>Subsidized cost for Character Breakfast, should you sign up. First come, first serve (availability is limited and details to come)</li><li>More MAGIC and CHAOS and BEAUTIFUL COMMUNITY than you knew you could squeeze into a long weekend!</li></ul>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 <a href="mailto:conference@coffinsiris.org">conference@coffinsiris.org</a> to apply or to request help with fundraising ideas.  If you have any questions about the conference, need assistance with filling out the form, or would like to volunteer on-site, please email <a href="mailto:conference@coffinsiris.org">conference@coffinsiris.org</a>. 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:<ul><li>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!</li><li>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&amp;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.</li><li>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.</li><li>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!)</li><li>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! </li></ul> Disney Tickets: You can purchase your tickets to Disney with our group discount via our micro site link: <a href="https://disneyevent.com/coffinsiris026" target="_blank">https://disneyevent.com/coffinsiris026</a> (scroll down to Buy Tickets Button). 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.  Deep breath. It’s a lot, and it’s going to be great! Cancellation &amp; Refund PolicyAll 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.

Coffin-Siris Syndrome Foundation

Coffin-Siris Syndrome Foundation Annual Conference 2026

2000 Hotel Plaza Blvd

Adult Registration

$125

Child/Youth Registration

$125

Person with CSS

$125

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