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:Brunch buffet.

Dinner Ticket Ages 10 to Adult

Dinner Ages 3-9

Dinner Ticket Ages 0-3

Join Us for Dinner at Chef Mickey&#39;s on Sunday July 26th at 5:00p.m.&nbsp;We&rsquo;re excited to be hosting a dinner with favorite Disney characters at Chef Mickey&rsquo;s, exclusively for our CSS community attending the Orlando conference!&nbsp;&nbsp;We&rsquo;ll enjoy a delicious unlimited dinner buffet in a private, accessible space at Disney&rsquo;s Contemporary Resort. &nbsp;&nbsp;Space is limited, so sign up soon if you plan to join! Tickets are first come, first serve, with no refunds available. This ticket is your reservation, and a ticket is required to attend. Registration will close immediately once we hit capacity.&nbsp;&nbsp;What to Expect: &nbsp;&nbsp;We&rsquo;ll gather for character dining featuring a delicious buffet meal in a bright, happy space. As the monorail whizzes by, soak up the expansive views of Bay Lake under a stunning 90-foot-high mural by Disney artist Mary Blair. Mickey Mouse and some of his favorite pals will make surprise appearances and wave hello . Each table will receive a special, autographed card keepsake from Mickey Mouse and his friends.&nbsp;&nbsp;Throughout the dining experience, Mickey Mouse and some of his favorite pals will make surprise appearances in each of the dining rooms. See them move throughout the restaurant, waving hello as rollicking music fills the air.&nbsp;&nbsp;Cost: &nbsp;&nbsp;The CSS Foundation is offering discounted tickets to the event. The cost per guest ages 10-adult is $35, and the cost for children ages 3-9 is $25. If you&#39;d like to make an additional donation to support the Foundation&#39;s cost of subsidizing these tickets, we would really appreciate your generosity! Children ages 0-3 are free.&nbsp;While your kiddos ages 0&ndash;3 are free, they still require a ticket to have an accurate headcount for the venue and our reservation. Drinks including juice, milk, and Coke products are included. You are responsible for any a la carte beverages.&nbsp;&nbsp;Attendees are responsible for their own transportation to/from Chef Mickey&rsquo;s, a 20 minute drive from the Drury. You may also take the Drury shuttle to the Transportation and Ticket Center and then ride the Monorail to Contemporary Resort; there are a couple of security check points and metal detectors, so plan ahead. This option can take up to an hour. The Drury Shuttle schedule is released a few weeks ahead of the event.&nbsp;&nbsp;Food and Drink: &nbsp;&nbsp;Enjoy a selection of some of your favorite &nbsp;dishes. Drinks including juice, milk, and Coke products are included.&nbsp;A la carte beverages are available at an additional cost to you. We are awaiting an allergen guide with more information. &nbsp; Tomato and Rosemary FocacciaSeasonally Inspired Salads and Soups with Assorted DressingsCarving Station featuring Chef&rsquo;s SelectionShrimp ScampiCarved New York Strip Loin and Herb-roasted TurkeyPlant-based Seasonal-inspired DishesBaked Macaroni &amp; CheeseButternut Squash RavioliGrilled and Roasted VegetablesClassic Favorites for ChildrenChef&rsquo;s Selection of Desserts, including Warm Chocolate Cake <a fr-original-style="" href="https://disneyworld.disney.go.com/dining/contemporary-resort/chef-mickeys/?CMP=OKC-90001369_GM_WDW_dining_chefmickeys_NA" rel="noopener noreferrer" style="text-decoration-color: initial; user-select: auto; box-sizing: inherit;" target="_blank">Visit the Chef Mickey website to learn more.&nbsp;</a>&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, We are looking forward to seeing you at Chef Mickey&#39;s on Sunday July 26 at 5:00pm.&nbsp; <a fr-original-style="" href="https://disneyworld.disney.go.com/dining/contemporary-resort/chef-mickeys/?CMP=OKC-90001369_GM_WDW_dining_chefmickeys_NA" rel="noopener noreferrer" style="text-decoration-color: initial; user-select: auto; box-sizing: inherit;" target="_blank">Read more about Chef Mickey&#39;s on their website.</a> If you have any questions, please send us an email <a fr-original-style="" href="mailto:conference@coffinsiris.org" style="text-decoration-color: initial; user-select: auto; box-sizing: inherit;">conference@coffinsiris.org</a><a href="https://disneyworld.disney.go.com/dining/contemporary-resort/chef-mickeys/?CMP=OKC-90001369_GM_WDW_dining_chefmickeys_NA" rel="noopener noreferrer" target="_blank" fr-original-style="" style="text-decoration-color: initial; user-select: auto; box-sizing: inherit;"></a>.&nbsp; Sincerely,&nbsp;Gaylen Mohregaylen@coffinsiris.org

Join Us for Dinner at Chef Mickey's on Sunday July 26th at 5:00p.m. We’re excited to be hosting a dinner with favorite Disney characters at Chef Mickey’s, exclusively for our CSS community attending the Orlando conference!  We’ll enjoy a delicious unlimited dinner buffet in a private, accessible space at Disney’s Contemporary Resort.   Space is limited, so sign up soon if you plan to join! Tickets are first come, first serve, with no refunds available. This ticket is your reservation, and a ticket is required to attend. Registration will close immediately once we hit capacity.  What to Expect:   We’ll gather for character dining featuring a delicious buffet meal in a bright, happy space. As the monorail whizzes by, soak up the expansive views of Bay Lake under a stunning 90-foot-high mural by Disney artist Mary Blair. Mickey Mouse and some of his favorite pals will make surprise appearances and wave hello . Each table will receive a special, autographed card keepsake from Mickey Mouse and his friends.  Throughout the dining experience, Mickey Mouse and some of his favorite pals will make surprise appearances in each of the dining rooms. See them move throughout the restaurant, waving hello as rollicking music fills the air.  Cost:   The CSS Foundation is offering discounted tickets to the event. The cost per guest ages 10-adult is $35, and the cost for children ages 3-9 is $25. If you'd like to make an additional donation to support the Foundation's cost of subsidizing these tickets, we would really appreciate your generosity! Children ages 0-3 are free. While your kiddos ages 0–3 are free, they still require a ticket to have an accurate headcount for the venue and our reservation. Drinks including juice, milk, and Coke products are included. You are responsible for any a la carte beverages.  Attendees are responsible for their own transportation to/from Chef Mickey’s, a 20 minute drive from the Drury. You may also take the Drury shuttle to the Transportation and Ticket Center and then ride the Monorail to Contemporary Resort; there are a couple of security check points and metal detectors, so plan ahead. This option can take up to an hour. The Drury Shuttle schedule is released a few weeks ahead of the event.  Food and Drink:   Enjoy a selection of some of your favorite  dishes. Drinks including juice, milk, and Coke products are included. A la carte beverages are available at an additional cost to you. We are awaiting an allergen guide with more information.   Tomato and Rosemary FocacciaSeasonally Inspired Salads and Soups with Assorted DressingsCarving Station featuring Chef’s SelectionShrimp ScampiCarved New York Strip Loin and Herb-roasted TurkeyPlant-based Seasonal-inspired DishesBaked Macaroni &amp; CheeseButternut Squash RavioliGrilled and Roasted VegetablesClassic Favorites for ChildrenChef’s Selection of Desserts, including Warm Chocolate Cake <a href="https://disneyworld.disney.go.com/dining/contemporary-resort/chef-mickeys/?CMP=OKC-90001369_GM_WDW_dining_chefmickeys_NA" target="_blank">Visit the Chef Mickey website to learn more. </a>

Coffin-Siris Syndrome Foundation

Chef Mickey's Sunday Dinner CSS Conference

4600 World Dr

Dinner Ticket Ages 10 to Adult

$35

Dinner Ages 3-9

$25

Dinner Ticket Ages 0-3

Free

Add a donation for Coffin-Siris Syndrome Foundation