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

Child/Youth  Registration

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 12-14, 2024. We look forward to seeing you! Please read some important event information below: Upon Arrival:On Friday July 12th, we will have a registration desk set up in the lobby of the Element (2400 E 82nd St, Bloomington, MN 55425 ) from 3pm-6pm. There you will be able to pick up the conference schedule, swag bag, t-shirts, badges etc..*For those arriving late or on Saturday, please visit the registration desk at the Radisson on Saturday morning. Saturday, July 13th Conference Sessions (9am-5:30pm)Radisson Blu Mall of America 2100 Killebrew Dr, Bloomington, MN 55425*Guided walking departure times from Element lobby (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 room block reservation link below. You may use this link to reserve rooms at both the Element and the AC.  https://www.marriott.com/event-reservations/reservation-link.mi?id=1703792349281&key=GRP&app=  **In order to take advantage of these discounted rates, your room(s) must be booked by May 10th. Any reservations made after that date will be subject to availability at varied rates.   Check back on our Facebook event page for updates! https://fb.me/e/6DjzjSwVa Please feel free to reach out to us with any questions, via email <a href="mailto:conference@coffinsiris.org" style="color:inherit;text-decoration:inherit;user-select:auto;box-sizing:inherit">conference@coffinsiris.org</a> or by phone 203-610-5827.

WE CAN’T WAIT TO SEE YOU at the2024 Coffin-Siris Syndrome Conference When: July 12-14, 2024 Where: Radisson Blu, 2100 Killebrew Dr. Bloomington, MN Room Block: Element, 2400 E 82nd St., Bloomington, MN                         AC Hotel, 8100 26th Ave S, Bloomington, MN <div>IT'S A WILD LIFE we share, isn't it? Come join us as we explore, learn, and spend time together in the outskirts of Minneapolis, MN! </div><div> </div><div>The educational portion of the conference will take place on Saturday, July 13th at the Radisson Blu, which is attached to the Mall of America. We have intentionally reserved room blocks across the street from the mall, at the Element and AC hotel - and not at the Radisson, so we can provide free daily breakfast, dinners for families on Friday/Saturday nights and ample community gathering space with the ability to bring in our own food/beverages. For those who would prefer to stay onsite at the Radisson Blu, you may inquire directly through the hotel. The walk between The Element and AC Hotels and Radisson Blu is 0.3 miles through the mall, or just under 1 mile around the perimeter. We will have two guided walks from the Element hotel lobby to the Radisson Blu on Saturday morning. Anyone who feels they would like to stay in the CSS room block but are unable to make the walk to the Radisson, please e-mail <a href="mailto:conference@coffinsiris.org">conference@coffinsiris.org</a> so we can talk about alternative arrangements. </div> ROOM BLOCKS<div> </div><div>We have room blocks (they share a parking lot) with negotiated special rates available for our group. </div> <div>*The Element (Marriott) blocks are currently sold out. The AC rooms are still available. Please book by May 10th. </div> <div>*The AC (Marriott): Chic rooms sleeping up to 4 people per room, on-site bar and restaurant, fitness center, can walk across to use pool or join for breakfast at the Element.  If you choose to purchase breakfast at the AC, they offer a European style buffet breakfast for $17/pp with steep discounted kids price. Rooms are $159-179/night dependent upon room type.</div> <div>*Proximity to Airport: Both hotels (and conference venue) are minutes from the MSP airport and can be accessed by a short Uber ride or public train system that departs the airport and arrives directly across the street from the Element Hotel.</div> <div>*Parking: Element and AC have waived parking fees for our group. </div> <div>IMPORTANT: Room blocks with our discounted rate has been extended to May 10th. If you anticipate attending, please book a room!  There is no fee in cancelling down the road!</div><div> </div><div>Hotel booking links: can be found <a href="https://www.marriott.com/event-reservations/reservation-link.mi?id=1703792349281&amp;key=GRP&amp;app=resvlink"></a><a href="https://www.marriott.com/event-reservations/reservation-link.mi?id=1703792349281&amp;key=GRP&amp;app=" target="_blank">here. </a></div> <div>Cost of Registration: Conference registration is currently $150 per person (until June 1). This includes:</div><ul><li>All conference content and materials</li><li>Friday July 12th: Family social event, swag, Dad's night event with dinner and drinks, dinner for everyone else</li><li>Saturday July 13th: Speakers, lunch, childcare and programming, Mom's night event with dinner and drinks, dinner for everyone else</li><li>Sunday July 14th: Inclusive family event, pool parties, etc. </li></ul> Any registrations after 06/01/24 will be $200/pp. Please understand how much early registration helps our planning! Scholarships and fundraising assistance are available for families with financial need. E-mail conference@coffinsiris.org for details.  The CSS Foundation subsidizes approximately 2/3 of the actual costs for all attendees, therefore if your family has the financial means to pay more you can make an additional donation on your registration form. We are grateful for your support.  If you have any questions about the conference, need assistance with filling out the form, or would like to volunteer, please email <a href="mailto:conference@coffin-siris.org">conference@coffinsiris.org</a>.

Coffin-Siris Syndrome Foundation

Add a donation for Coffin-Siris Syndrome Foundation

Coffin-Siris Syndrome Foundation Annual Conference 2024

2100 Killebrew Dr

Adult Registration

$200

Child/Youth Registration

$200

Person with CSS

$200