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.

Thanks to the amazing support and growth of the CSS community, the conference is at capacity for some events. If you have not registered for the conference but would like to, please email conference@coffinsiris.org. 

We will work with you to understand whether the activities you are interested in are still available and if the weekend will be a good fit for you and your family's needs (eg, childcare requirements).

Thank you.

Registration

We can't wait to see you in Boston, Massachusetts,   Friday July 14th-Sunday July 16th  for the annual Coffin Siris Syndrome Foundation Conference.   Presenters include Dr. Samantha Vergano, Clinical Geneticist,  Coffin-Siris Syndrome Clinic, Children's Hospital of the Kings Daughters Dr. Tim Feyma, Pediatric Neurologist, Gillette Children's  Beth Liesenfeld, MOT, OTR/L, The IEP Lab Alexandria Dunn, CFP, CTFA, Special Needs Financial Planning, Affinia Financial Planning Rick Guidotti, Photographer and Advocate, Positive Exposure Dr. Emily Jean Davidson, Complex Care Service, Registered Yoga Teacher, Boston Children's Dr. Marie Reilly, Developmental Behavioral Pediatrician, Boston Children's Maria Paiewonsky, Think College, Institute for Community Inclusion, UMass Boston A Moment of Magic  and more special guests to be announced! Topics Include: Financial Planning, Wellness, Post-Secondary Planning, Self-Advocate Panel,  Feeding and Nutrition, Coffee Chats with Dr. V Developmental Pediatrics, and Speech and Language   The conference registration is $100/person (all ages). This includes:<ul><li style="box-sizing:inherit">All conference content and materials</li><li style="box-sizing:inherit">One awesome swag bag per family</li><li style="box-sizing:inherit">Most meals throughout the weekend</li><li style="box-sizing:inherit">Dads' night, Friday night, July 14th</li><li style="box-sizing:inherit">Moms' night, Charleston River Boat Cruise, Saturday night, July 15th </li><li style="box-sizing:inherit">Family activity, Sunday morning, July 16th</li><li style="box-sizing:inherit">Activity for young adults and adults with CSS </li><li style="box-sizing:inherit">High quality care for the duration of the conference on Saturday with A Helping Hand, a professional caregiving company, offering fun and engaging activities. </li><li style="box-sizing:inherit">Young Adult and Teen room with fun activities run by volunteers </li></ul> Scholarships and fundraising assistance are available for families with financial need.  If you have any questions about the conference or would like to volunteer, please email <a href="mailto:conference@coffin-siris.org">conference@coffinsiris.org</a>.  Please be sure to pre-register with A Helping Hand care if needed. Care registration information will also be emailed to you. <img src="https://res.cloudinary.com/hxn9dbuhd/image/upload/v1678930598/vnnypravo8jxj4sapbfo.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" />

Hello <span contenteditable="false" data-custom-variable="{{firstname}}" fr-original-class="fr-deletable styled-tag-chip " 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 " 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 14th-16th, 2023.  📭   at the Aloft Hotel, 401-403 D St, Boston, MA 02210, USA On Saturday 07/15, A Helping Hand will provide onsite event childcare "Kids Camp". This cost is included in your registration fee. You must pre-register if your child or loved one needs care here: <a href="http://www.ahelpinghandevents.com">Pre-Register for Kids Camp/Child Care with A Helping Hand</a> .You will need to register for a new account with your child(ren)'s information. Then enter the code N6VJ on the Event Registration tab.  Pre-registration for childcare will close on July 6, 2023. We will also have a young adult/teen activity room for those attendees who do not need childcare but want to participate in volunteer run activities. Please do not register for A Helping Hand if your loved one would prefer the young adult/teen room. This is a great option for older siblings as well. <img src="https://res.cloudinary.com/hxn9dbuhd/image/upload/v1678932259/dzcpu56rtjmw4s08ullb.jpg" style="width:372px;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" /> If you would like to purchase additional T-Shirts, you can purchase them in person at the conference.  You can reserve a hotel room with our hotel room block here:  Aloft Boston Seaport District (location of the conference) -2 queen beds = $249 + taxes/fees<a href="https://book.passkey.com/.../50472978/owner/14051427/home">BOOK ALOFT</a>  Option 2: Element Boston Seaport District (immediately adjacent to the Aloft and includes breakfast) Studio Suite, 1 King + couch = $229 + taxes/fees (Note: 4 people are permitted in this room, but enter 3 at registration to ensure this room type is available)Studio Suite, 2 Queen + couch = $269 + taxes/fees <a href="https://book.passkey.com/event/50458072/owner/13935717/home">BOOK ELEMENT</a>  Please feel free to reach out to us with any questions, via email <a href="mailto:conference@coffinsiris.org">conference@coffinsiris.org</a> or via phone 720-514-9904

We can't wait to see you in Boston, Massachusetts,   Friday July 14th-Sunday July 16th  for the annual Coffin Siris Syndrome Foundation Conference.   Presenters include Dr. Samantha Vergano, Clinical Geneticist,  Coffin-Siris Syndrome Clinic, Children's Hospital of the Kings Daughters Dr. Tim Feyma, Pediatric Neurologist, Gillette Children's  Beth Liesenfeld, MOT, OTR/L, The IEP Lab Alexandria Dunn, CFP, CTFA, Special Needs Financial Planning, Affinia Financial Planning Rick Guidotti, Photographer and Advocate, Positive Exposure Dr. Emily Jean Davidson, Complex Care Service, Registered Yoga Teacher, Boston Children's Dr. Marie Reilly, Developmental Behavioral Pediatrician, Boston Children's Maria Paiewonsky, Think College, Institute for Community Inclusion, UMass Boston A Moment of Magic  and more special guests to be announced! Topics Include: Financial Planning, Wellness, Post-Secondary Planning, Self-Advocate Panel,  Feeding and Nutrition, Coffee Chats with Dr. V Developmental Pediatrics, and Speech and Language   The conference registration is $100/person (all ages). This includes:<ul><li>All conference content and materials</li><li>One awesome swag bag per family</li><li>Most meals throughout the weekend</li><li>Dads' night, Friday night, July 14th</li><li>Moms' night, Charleston River Boat Cruise, Saturday night, July 15th </li><li>Family activity, Sunday morning, July 16th</li><li>Activity for young adults and adults with CSS </li><li>High quality care for the duration of the conference on Saturday with A Helping Hand, a professional caregiving company, offering fun and engaging activities. </li><li>Young Adult and Teen room with fun activities run by volunteers </li></ul> Scholarships and fundraising assistance are available for families with financial need.  If you have any questions about the conference or would like to volunteer, please email <a href="mailto:conference@coffin-siris.org">conference@coffinsiris.org</a>.  Please be sure to pre-register with A Helping Hand care if needed. Care registration information will also be emailed to you. <img src="https://res.cloudinary.com/hxn9dbuhd/image/upload/v1678930598/vnnypravo8jxj4sapbfo.jpg" style="width:600px;display:block;vertical-align:top;margin:5px auto;text-align:center;position:relative;cursor:pointer;padding:0px 1px;user-select:none;box-sizing:inherit;max-width:100%" />

Add a donation for Coffin-Siris Syndrome Foundation

Coffin-Siris Syndrome Foundation Annual Conference

401-403 D St

Registration

US$125