1p36 Deletion Support & Awareness

### Context Profile for 1p36 Deletion Support & Awareness

1. **Organization Mission & Cause**:
   - **Mission**: The 1p36 Deletion Support & Awareness organization aims to provide support and raise awareness for families affected by 1p36 deletion syndrome, a genetic condition that results in various developmental and health challenges. The organization focuses on connecting families, funding research, and providing resources to improve the quality of life for those impacted by the syndrome.
   - **Cause**: The organization emphasizes the importance of community support, education, and research funding to better understand and manage the challenges associated with 1p36 deletion syndrome.

2. **Type of Activities**:
   - **Events**: The organization hosts events such as the "1p36 DSA Virtual Fun Run & Roll," which encourages participation through running, walking, or rolling to raise funds and awareness.
   - **Fundraising Campaigns**: Campaigns like "Team Alice!" focus on personal stories to engage donors and raise funds for research and family support.
   - **Community Programs**: They provide scholarships for families to attend conferences where they can learn from professionals and connect with other families facing similar challenges.

3. **Tone of Voice**:
   - The tone is **friendly**, **inspiring**, and **supportive**. The language used is approachable and warm, aiming to create a sense of community and encouragement among families and supporters. Phrases like "Thank you so much for considering donating" and "Alice is so awesome!" reflect a positive and uplifting communication style.

4. **Emoji Usage**:
   - The organization uses emojis sparingly but effectively in their communications, such as in the subject line of email campaigns (e.g., "You're Invited: 1p36 DSA Virtual Fun Run & Roll 🏃‍♀️🦽"). This adds a friendly and engaging element to their messaging, making it more relatable and visually appealing.

5. **Key Facts**:
   - **Founding Info**: Specific founding details are not provided on the website, but the organization appears to be community-driven and focused on family support.
   - **Scale**: The organization has a total of 37 forms and has conducted 49 email campaigns, indicating an active engagement with their community.
   - **Impact Metrics**: While specific metrics are not detailed, the organization emphasizes the importance of funding research and supporting families, suggesting a focus on measurable outcomes related to community support and awareness.
   - **Volunteer Info**: The website does not explicitly mention volunteer opportunities, but the community-driven nature of their events implies a reliance on volunteers for support.

6. **Writing Guidelines**:
   - **Style**: Use a conversational and friendly tone that reflects warmth and community spirit. Avoid overly formal language; instead, opt for approachable phrases.
   - **Structure**: Keep sentences clear and concise. Use bullet points for lists (as seen in the campaign descriptions) to enhance readability.
   - **Engagement**: Incorporate personal stories and testimonials to create emotional connections. Use inclusive language that invites participation and support.
   - **Call to Action**: Clearly articulate calls to action, such as "donate," "join us," or "learn more," to encourage engagement and support.

This context profile provides a comprehensive overview of the 1p36 Deletion Support & Awareness organization, allowing AI assistants to generate personalized and effective content that aligns with their mission and values.

Early Bird Adult (age 12 & up)

Adult (age 12 & up)

Early Bird Child (age 2-11)

Child (age 2-11)

Individual with 1p36 deletion syndrome (any age)

Infant/Toddler (0-1)

Registration for adult, child, and individual with 1p36 deletion syndrome includes a shirt but you can order an additional one here.

Additional Conference T-shirt

Welcome to the 17th annual 1p36 Deletion Support &amp; Awareness Conference, set to take place in the vibrant city of San Antonio, Texas, from July 10-12, 2025. We are thrilled to gather once again as a community to share knowledge, support one another, and raise awareness about 1p36 deletion syndrome. Our conference will be hosted at the beautiful Estancia del Norte San Antonio hotel, Tapestry Collection by Hilton providing a comfortable and welcoming environment for all attendees. The main venue this year will be Morgan&#39;s Wonderland and Morgan&#39;s Inspiration Island, two extraordinary locations dedicated to inclusivity and accessibility for individuals of all abilities. If you have not heard of Morgan&#39;s Wonderland you can go to <a fr-original-style="text-decoration-color:initial;user-select:auto;box-sizing:inherit;" href="https://morganswonderland.org/" style="text-decoration-color:initial;user-select:auto;box-sizing:inherit;">Morgan&#39;s Wonderland - The World&#39;s First Ultra-Accessible&trade; Theme Park</a> to learn more. On their website are very good FAQ&#39;s to answer all of your questions about the parks. Over the course of three days, we will engage in a variety of informative sessions and inspiring talks designed to empower and educate. We will also have plenty of opportunities for networking and connecting with fellow families, caregivers, professionals, and advocates who share our commitment to improving the lives of those affected by 1p36 deletion syndrome. 2025 conference hosts, the Burns Family, in collaboration with the Board, are working hard to organize and facilitate an incredibly memorable weekend! **For those who have attended conferences before, we will be doing things a little differently this year. So please keep reading** We plan on having fewer speakers and focusing more on family time. After Registration on Thursday, we will have family introductions and our first session. There will be speakers Friday morning and then Friday afternoon will be spent at Morgan&#39;s Wonderland, followed by a family dinner/party at Morgan&#39;s Wonderland Event Center. Saturday will start with speakers and will conclude with a visit to Morgan&#39;s Inspiration Island water park. Due to the reduction of speakers and increased family time in the parks, we will not be offering childcare this year. We encourage you to bring your kids with 1p36 deletion syndrome and their siblings to hang out with us and participate in all parts of the conference. There will be plenty of space for you to spread out and make yourself comfortable. We have been able to secure a special 1p36 group room rate of $129 a night (taxes and fees not included) for 1 King or 2 queen Beds. The hotel features a pool and offers complimentary basic high-speed, wireless internet in guestrooms and meeting spaces, as well as complimentary self-parking for all attendees. There is also an airport shuttle. The group rate is available for up to 3 days before and 3 days after the conference, based on availability. Individual reservations can be made by calling hotel reservations at 210-366-2424 or online by <a fr-original-style="text-decoration-color:initial;user-select:auto;box-sizing:inherit;" href="https://group.tapestrycollection.com/25x99i" rel="noopener noreferrer" style="text-decoration-color:initial;user-select:auto;box-sizing:inherit;" target="_blank">clicking here</a>. If you need to call to make your reservation, please ask for the 1p36 Deletion Support &amp; Awareness&nbsp;group rate. Together, we will celebrate our successes, confront our challenges, and strengthen the bonds that make our community so special. We look forward to seeing you in San Antonio for an unforgettable conference experience! For more information about Texas sites and attractions, visit <a fr-original-style="text-decoration-color:initial;user-select:auto;box-sizing:inherit;" href="https://www.traveltexas.com/" rel="noopener noreferrer" style="text-decoration-color:initial;user-select:auto;box-sizing:inherit;" target="_blank">www.traveltexas.com</a>For more information about San Antonio sites and attractions, visit <a fr-original-style="text-decoration-color:initial;user-select:auto;box-sizing:inherit;" href="https://www.visitsanantonio.com/" rel="noopener noreferrer" style="text-decoration-color:initial;user-select:auto;box-sizing:inherit;" target="_blank">www.visitsanantonio.com</a> Your registration fees cover:<ul fr-original-style="" style="box-sizing: inherit;"><li fr-original-style="margin-top:0px;margin-right:0px;margin-bottom:0px;width:100%;line-height:1.5;box-sizing:inherit;color:rgb(0, 0, 0);" style="margin-top:0px;margin-right:0px;margin-bottom:0px;width:100%;line-height:1.5;box-sizing:inherit;color:rgb(0, 0, 0);">Conference attendance and materials</li><li fr-original-style="margin-top:0px;margin-right:0px;margin-bottom:0px;width:100%;line-height:1.5;box-sizing:inherit;color:rgb(0, 0, 0);" style="margin-top:0px;margin-right:0px;margin-bottom:0px;width:100%;line-height:1.5;box-sizing:inherit;color:rgb(0, 0, 0);">Lunch for attendees aged 2 and up on Friday and Saturday</li><li fr-original-style="margin-top:0px;margin-right:0px;margin-bottom:0px;width:100%;line-height:1.5;box-sizing:inherit;color:rgb(0, 0, 0);" style="margin-top:0px;margin-right:0px;margin-bottom:0px;width:100%;line-height:1.5;box-sizing:inherit;color:rgb(0, 0, 0);">Dinner for attendees aged 2 and up on Friday evening</li><li fr-original-style="margin-top:0px;margin-right:0px;margin-bottom:0px;width:100%;line-height:1.5;box-sizing:inherit;color:rgb(0, 0, 0);" style="margin-top:0px;margin-right:0px;margin-bottom:0px;width:100%;line-height:1.5;box-sizing:inherit;color:rgb(0, 0, 0);">Conference T-shirt for attendees 2 and up (all attendees with 1p36 deletion syndrome will receive a shirt regardless of age)</li><li fr-original-style="margin-top:0px;margin-right:0px;margin-bottom:0px;width:100%;line-height:1.5;box-sizing:inherit;color:rgb(0, 0, 0);" style="margin-top:0px;margin-right:0px;margin-bottom:0px;width:100%;line-height:1.5;box-sizing:inherit;color:rgb(0, 0, 0);">Entrance to Morgan&#39;s Wonderland on Friday</li><li fr-original-style="margin-top:0px;margin-right:0px;margin-bottom:0px;width:100%;line-height:1.5;box-sizing:inherit;color:rgb(0, 0, 0);" style="margin-top:0px;margin-right:0px;margin-bottom:0px;width:100%;line-height:1.5;box-sizing:inherit;color:rgb(0, 0, 0);">Entrance to Morgan&#39;s Inspiration Island on Saturday</li></ul>1p36 Deletion Support &amp; Awareness is providing 6(six) scholarships to attend the 17th Annual 1p36 Deletion Support &amp; Awareness conference in San Antonio, TX July 10-12, 2025. Each scholarship includes 3 nights lodging at Estancia del Norte San Antonio, Tapestry Collection by Hilton and free conference registration for 2 adults and the individual with 1p36 deletion syndrome. Please go to the <a fr-original-style="text-decoration-color:initial;user-select:auto;box-sizing:inherit;" href="https://forms.gle/r2E4sxEfr65ju5pT6" rel="noopener noreferrer" style="text-decoration-color:initial;user-select:auto;box-sizing:inherit;" target="_blank">Scholarship application page</a> to apply. REGISTRATION ENDS June 13th, No refunds past June 13th.

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 17th Annual 1p36 Deletion Support & Awareness conference is San Antonio, TX. Our tradition is to kick off each conference with a slideshow featuring every 1p36 individual in attendance. To pull this off we need PHOTOS and INFO from you ASAP!! Please email your submission to photos@1p36dsa.org and be sure to include your 1p family member’s first and last name in the subject line. Items we need:-One individual photo of your 1p36 family member-One family photo (optional)-Individual’s name-Age during the conference dates-Where he/she is from-Share a "WOW" moment that your 1p36 champion has this last year For up to the minute updates, please follow our <a href="https://www.facebook.com/1p36DSA/events" rel="noopener noreferrer" style="text-decoration-color:initial;user-select:auto;box-sizing:inherit" target="_blank">Facebook conference event page</a> We can't wait to see you! Ken ShirtcliffPresident, 1p36 Deletion Support & Awarenessk.shirtcliff@1p36dsa.org

Welcome to the 17th annual 1p36 Deletion Support &amp; Awareness Conference, set to take place in the vibrant city of San Antonio, Texas, from July 10-12, 2025. We are thrilled to gather once again as a community to share knowledge, support one another, and raise awareness about 1p36 deletion syndrome. Our conference will be hosted at the beautiful Estancia del Norte San Antonio hotel, Tapestry Collection by Hilton providing a comfortable and welcoming environment for all attendees. The main venue this year will be Morgan's Wonderland and Morgan's Inspiration Island, two extraordinary locations dedicated to inclusivity and accessibility for individuals of all abilities. If you have not heard of Morgan's Wonderland you can go to <a href="https://morganswonderland.org/">Morgan's Wonderland - The World's First Ultra-Accessible™ Theme Park</a> to learn more. On their website are very good FAQ's to answer all of your questions about the parks. Over the course of three days, we will engage in a variety of informative sessions and inspiring talks designed to empower and educate. We will also have plenty of opportunities for networking and connecting with fellow families, caregivers, professionals, and advocates who share our commitment to improving the lives of those affected by 1p36 deletion syndrome. 2025 conference hosts, the Burns Family, in collaboration with the Board, are working hard to organize and facilitate an incredibly memorable weekend! **For those who have attended conferences before, we will be doing things a little differently this year. So please keep reading** We plan on having fewer speakers and focusing more on family time. After Registration on Thursday, we will have family introductions and our first session. There will be speakers Friday morning and then Friday afternoon will be spent at Morgan's Wonderland, followed by a family dinner/party at Morgan's Wonderland Event Center. Saturday will start with speakers and will conclude with a visit to Morgan's Inspiration Island water park. Due to the reduction of speakers and increased family time in the parks, we will not be offering childcare this year. We encourage you to bring your kids with 1p36 deletion syndrome and their siblings to hang out with us and participate in all parts of the conference. There will be plenty of space for you to spread out and make yourself comfortable. We have been able to secure a special 1p36 group room rate of $129 a night (taxes and fees not included) for 1 King or 2 queen Beds. The hotel features a pool and offers complimentary basic high-speed, wireless internet in guestrooms and meeting spaces, as well as complimentary self-parking for all attendees. There is also an airport shuttle. The group rate is available for up to 3 days before and 3 days after the conference, based on availability. Individual reservations can be made by calling hotel reservations at 210-366-2424 or online by <a href="https://group.tapestrycollection.com/25x99i" target="_blank">clicking here</a>. If you need to call to make your reservation, please ask for the 1p36 Deletion Support &amp; Awareness group rate. Together, we will celebrate our successes, confront our challenges, and strengthen the bonds that make our community so special. We look forward to seeing you in San Antonio for an unforgettable conference experience! For more information about Texas sites and attractions, visit <a href="https://www.traveltexas.com/" target="_blank">www.traveltexas.com</a>For more information about San Antonio sites and attractions, visit <a href="https://www.visitsanantonio.com/" target="_blank">www.visitsanantonio.com</a> Your registration fees cover:<ul><li>Conference attendance and materials</li><li>Lunch for attendees aged 2 and up on Friday and Saturday</li><li>Dinner for attendees aged 2 and up on Friday evening</li><li>Conference T-shirt for attendees 2 and up (all attendees with 1p36 deletion syndrome will receive a shirt regardless of age)</li><li>Entrance to Morgan's Wonderland on Friday</li><li>Entrance to Morgan's Inspiration Island on Saturday</li></ul>1p36 Deletion Support &amp; Awareness is providing 6(six) scholarships to attend the 17th Annual 1p36 Deletion Support &amp; Awareness conference in San Antonio, TX July 10-12, 2025. Each scholarship includes 3 nights lodging at Estancia del Norte San Antonio, Tapestry Collection by Hilton and free conference registration for 2 adults and the individual with 1p36 deletion syndrome. Please go to the <a href="https://forms.gle/r2E4sxEfr65ju5pT6" target="_blank">Scholarship application page</a> to apply. REGISTRATION ENDS June 13th, No refunds past June 13th.

1p36 Deletion Support & Awareness

17th Annual 1p36 Deletion Support & Awareness Conference

37 NE Loop 410 At McCullough

Add a donation for 1p36 Deletion Support & Awareness

Adult (age 12 & up)

US$95

Child (age 2-11)

US$65

Individual with 1p36 deletion syndrome (any age)

Free

Infant/Toddler (0-1)

Free

Additional Conference T-shirt

US$20