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.

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

Adult Registration

For any adult family member, or companion, other than a person with CSS (for example mom, dad, grandparent, caregiver, adult siblings). No food is included in this ticket. 

Adult Registration - No Food

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

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);display:inline-block;margin:0px;padding:1px 8px;font-size:11px;line-height:16px;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);display:inline-block;margin:0px;padding:1px 8px;font-size:11px;line-height:16px;overflow-wrap:anywhere;user-select:none;box-sizing:inherit">Last name, Thank you for registering for the CSS Conference, July 10-13, 2025. Please read some important event information below: <img src="https://res.cloudinary.com/hxn9dbuhd/image/upload/v1738002102/dgfou5khyk0cffbnklyo.jpg" style="width:600px;display:block;vertical-align:top;margin:5px auto;text-align:center;position:relative;max-width:100%;cursor:pointer;padding:0px 1px;user-select:none;box-sizing:inherit" /> Upon Arrival: On Thursday July 10th, we will have a registration desk. There you will be able to pick up the conference schedule, swag bag, t-shirts, badges etc. There will be a meet and greet activity that evening. We will host a Teen and Adult activity and a casual happy hour. (Details TBD).  On Friday July 11th, we will have a registration desk. You will be able to pick up the conference schedule, swag bag, t-shirts, and badges. There will be a Dad's Night and Family Dinner that evening.  On Saturday, July 12th, Conference Sessions  will be held at the DoubleTree Denver Tech Center from 9am-5:30pm. There will be a Mom's Night and Family Dinner that evening.  On Sunday July 13th, there will be a family event. More details forthcoming!  One T-Shirt is included in your group's registration. If you would like to purchase additional t-shirts, they will be on sale at the registration desk throughout the weekend. Cash, Venmo and Apple pay accepted.  We strongly encourage you to reserve DISCOUNTED hotel rooms as soon as possible using our <a href="https://www.hilton.com/en/book/reservation/rooms/?ctyhocn=DENEWDT&arrivalDate=2025-07-10&departureDate=2025-07-13&groupCode=cdt914&room1NumAdults=1&displayCurrency=USD" rel="noopener noreferrer" style="text-decoration-color:initial;user-select:auto;box-sizing:inherit" target="_blank">room block reservation link.</a> These rooms are at a first come first serve basis with a limited number of connecting rooms.  **In order to take advantage of these discounted rates, your room(s) must be booked by June 19, 2025. Any reservations made after that date will be subject to availability at varied rates.   <a href="https://www.facebook.com/share/18crvP5mE5/" 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 href="https://chat.whatsapp.com/EpKmqFTFXIY2QcHy8nhTYu" style="text-decoration-color:initial;user-select:auto;box-sizing:inherit">Join in our WhatsApp chat!</a> Please feel free to reach out to us with any questions, via email <a href="mailto:conference@coffinsiris.org" style="text-decoration-color:initial;user-select:auto;box-sizing:inherit">conference@coffinsiris.org</a>.  We look forward to seeing you in Denver!

<div>WE CAN’T WAIT TO SEE YOU at the</div><div> </div><div>2025 Coffin-Siris Syndrome Foundation Conference</div><div> </div><div>When: Thursday, July 10th- Sunday, July 13th, 2025</div><div> </div><div>Where: DoubleTree by Hilton Hotel, Denver Tech Center</div><div> </div><div>7801 E Orchard Rd, Greenwood Village, CO 80111</div><div> </div><div> </div><div>Rare in Thin Air! Come join us as we celebrate, navigate, and share our RARE in the Mile High City!</div><div> </div><div>The educational portion of the conference will take place on Saturday, July 12th at the DoubleTree Hotel in the Denver Tech Center.</div><div> </div><div>Proximity to Airport and Transportation: The Tech Center is accessible from the Denver International Airport (DIA) via light rail, however renting a car is recommended and will give you the most ease and access around Denver. The airport is approximately 25 miles from the DoubleTree (an approximately 30 minute drive, or 1.5 hours on the light rail regional transit system). </div><div> </div><div>Room Block: We have one room block at the DoubleTree Denver Tech Center. They offer Double Queen Rooms, as well as King Rooms with pull-out couches. Room rates are set at $159/night. There are connecting rooms available for larger families at a lower nightly cost (the hotel states a 4 person max per sleeping room, with exceptions for babies). Connecting or additional room are available at $129 per night.  For those who need two connecting rooms, book online through our link at 2x$159 rate, and then call DoubleTree to get connecting/$129 rate for second room. Make sure to tell them you are with our group. The DoubleTree has an onsite restaurant, indoor and outdoor pools, free parking for all our guests, and fridges in all rooms. Room blocks rates are valid through June 19th, 2025. If you anticipate attending, <a href="https://www.hilton.com/en/book/reservation/rooms/?ctyhocn=DENEWDT&amp;arrivalDate=2025-07-10&amp;departureDate=2025-07-13&amp;groupCode=cdt914&amp;room1NumAdults=1&amp;displayCurrency=USD" target="_blank">please book a room here</a>. There is no fee for cancelling down the road.</div><div> </div><div>Meals: Breakfast is not included for free at the DoubleTree, though it is available through their restaurant. We will be offering light continental breakfast options (bagels, fruits, donuts) in our hospitality rooms on Friday, Saturday, and Sunday mornings for those interested. Additionally, we will provide dinner on Friday and Saturday evening, and lunch on Saturday. The DoubleTree was intentionally selected as it allows for ample community gathering space and our ability to bring in our own food and beverage throughout the weekend. </div><div> </div><div>Parking: DoubleTree has waived parking fees for our group. </div><div> </div><div>Cost of Registration: Conference registration is currently $175 per person (until June 1, 2025). This includes:</div><ul><li>All conference content and materials</li><li>Thursday, July 10th: Connect with the CSS Foundation, registration, swag, swim, CSS teen/adult self-advocate activity (details TBD), family meet and greet (recommended for first time attendees to the conference). </li><li><div>Friday, July 11th:  Registration, Canadian Connect, pool party, Dad's night event with dinner and drinks, as well as dinner and activity for everyone else.</div></li><li><div>Saturday, July 12th: Speakers, presentations, panels, lunch, childcare and programming, Mom's night event with dinner and drinks, dinner and activity for everyone else.</div></li><li>Sunday, July 13th: Inclusive family event, lunch and pool party.</li></ul><div>After 06/01/25, the cost will increase to $200/pp. Please understand how much early registration helps our planning!</div><div> </div><div>The CSS Foundation subsidizes approximately 2/3 of the actual costs for all attendees, therefore if your family has the financial means to contribute more, you may make an additional donation on your registration form. We are grateful for your support. </div> <div>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@coffin-siris.org">conference@coffinsiris.org</a>.</div>

Coffin-Siris Syndrome Foundation

Coffin-Siris Syndrome Foundation Annual Conference 2025

7801 E Orchard Rd

Adult Registration

US$175

Adult Registration - No Food

US$175

Child/Youth Registration

US$175

Person with CSS

US$175

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