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:Bella + Canvas Athletic Heather Onesie available in sizes 3-6m, 6-12m, 12-18, 18-24m Pick Up on Site at the CSS Conference

Onesie with Ears

Onesie with Rare Community, Real Magic Banner Logo

Onesie with Zebras

LXCL:Bella + Canvas Toddler T in Athletic Heather Available in 2T, 3T, 4T, 5T Pick up on site at the CSS Conference

Toddler T with Ears

Toddler T with Rare Community, Real Magic Banner Logo

Toddler T with Zebras

LXCL:Bella+Canvas Athletic Heather Youth T-Shirt in Sizes S-XL

Youth T-Shirt with Ears

Youth T-Shirt with Zebras

Youth T-Shirt with Rare Community, Real Magic Logo

LXCL:Bella+Canvas Athletic Heather Adult T-Shirt in Size XS-3XL

Adult T-Shirt with Ears

Adult T-Shirt with Rare Community, Real Magic Banner Logo

Adult T-Shirt with Zebras

LXCL:Bella + Canvas Athletic Heather Adult Tank in sizes XS-2XL

Adult Unisex Tank with Ears

Adult Unisex Tank with Rare Community Real Magic Banner Logo

Adult Tank with Zebras

Zebra Headband

Pre-order tank tops, tee-shirts for toddlers, kids, and adults, and onesies for the littles for the CSS Foundation Conference. We have two fun options: the classic zebra ears logo and a twist on the classic logo with cartoon zebra buddies.&nbsp; You will pick up these shirts on site at the conference.&nbsp; You also will get one free T-shirt in your swag bag.&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 your T-shirt purchase. You can pick up your shirts at the CSS Conference in July. We look forward to seeing you in Orlando! Gaylen Mohregaylen@coffinsiris.org

Pre-order tank tops, tee-shirts for toddlers, kids, and adults, and onesies for the littles for the CSS Foundation Conference. We have two fun options: the classic zebra ears logo and a twist on the classic logo with cartoon zebra buddies.  You will pick up these shirts on site at the conference.  You also will get one free T-shirt in your swag bag.