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:Join our Virtual CSS Conference 2026 💻 on ZoomFriday July 24 from 8am-3:00pm ET.&nbsp;&nbsp;All times listed in Eastern Time. Content will be recorded and available for streaming/viewing after the conference.&nbsp;The suggested price is $50 per family.&nbsp;Pay what you can starting at $25.&nbsp;After you purchase this ticket, you will receive a personal Zoom link in your email to complete your registration.&nbsp; The agenda for the virtual conference is: 8:00am Welcome from the Coffin-Siris Syndrome Foundation9:00am Registry and Research Updates with Dr. Vergano&nbsp;10:00am Epilepsy Foundation Florida - Florida Epilepsy Services &nbsp; &nbsp;&nbsp;11:00am Epigenetic Research with Dr. Miller12:00pm-2:00pm break&nbsp;2:00pm Autism and CSS with Dr. Bancroft&nbsp; Additionally, recorded presentations with Dr. Santen, Dr. Kim and Dr. Chen will be available for streaming.

Virtual Registration

Join our Virtual CSS Conference 2026 💻 on ZoomFriday July 24 from 8am-3:00pm ET.&nbsp;&nbsp;All times listed in Eastern Time. Content will be recorded and available for streaming/viewing after the conference.&nbsp;The suggested price is $50 per family.&nbsp;Pay what you can starting at $25.&nbsp;After you purchase this ticket, you will receive a personal Zoom link in your email to complete your registration.&nbsp; The agenda for the virtual conference is: 8:00am Welcome from the Coffin-Siris Syndrome Foundation9:00am Registry and Research Updates with Dr. Vergano&nbsp;10:00am Epilepsy Foundation Florida - Florida Epilepsy Services &nbsp; &nbsp;&nbsp;11:00am Epigenetic Research with Dr. Miller12:00pm-2:00pm break&nbsp;2:00pm Autism and CSS with Dr. Bancroft&nbsp; Additionally, recorded presentations with Dr. Santen, Dr. Kim and Dr. Chen will be available for streaming.&nbsp;

Hi <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, Thank you for registering for the virtual CSS conference!&nbsp; Please join the Zoom using this link. This link is unique to you. Please &nbsp;do not forward it.&nbsp;<a fr-original-style="" href="https://us06web.zoom.us/meeting/register/u7T9-JFwQTi1LSvIs1VinA#/registration" rel="noopener noreferrer noopener noreferrer" style="text-decoration-color: initial; user-select: auto; box-sizing: inherit;" target="_blank">https://us06web.zoom.us/meeting/register/u7T9-JFwQTi1LSvIs1VinA#/registration</a> You will also have access to recordings in late July after the conference concludes.&nbsp; Any questions? Email us: <a fr-original-style="" href="mailto:conference@coffinsiris.org" rel="noopener noreferrer noopener noreferrer noopener noreferrer" style="text-decoration-color: initial; user-select: auto; box-sizing: inherit;" target="_blank">conference@coffinsiris.org</a> Can&#39;t wait to see you on Zoom.&nbsp; Sincerely,The CSS Foundation&nbsp;

Join our Virtual CSS Conference 2026 💻 on ZoomFriday July 24 from 8am-3:00pm ET.  All times listed in Eastern Time. Content will be recorded and available for streaming/viewing after the conference. The suggested price is $50 per family. Pay what you can starting at $25. After you purchase this ticket, you will receive a personal Zoom link in your email to complete your registration.  The agenda for the virtual conference is: 8:00am Welcome from the Coffin-Siris Syndrome Foundation9:00am Registry and Research Updates with Dr. Vergano 10:00am Epilepsy Foundation Florida - Florida Epilepsy Services     11:00am Epigenetic Research with Dr. Miller12:00pm-2:00pm break 2:00pm Autism and CSS with Dr. Bancroft  Additionally, recorded presentations with Dr. Santen, Dr. Kim and Dr. Chen will be available for streaming.

Coffin-Siris Syndrome Foundation

Virtual CSS Foundation Conference 2026

Virtual Registration

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