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)

LXCL: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 18th annual 1p36 Deletion Support &amp; Awareness Conference, set to take place in the beautiful Pacific Northwest, from July 9-11, 2026. We are thrilled to gather once again as a community to share knowledge, support one another, and raise awareness about 1p36 deletion syndrome. Whether you&rsquo;re arriving early or staying late, the region offers endless opportunities for recreation and family fun. From the majestic Cascade Mountains to the sparkling Puget Sound, evergreen forests, and crystal-clear lakes, the natural beauty of Washington is the perfect backdrop for this unforgettable event. We&rsquo;ll convene at the beautiful Hilton Bellevue, located in Seattle&rsquo;s vibrant eastside. Nestled in Bellevue&rsquo;s bustling business district, the Hilton Bellevue offers spacious accommodations and is just 10 miles from downtown Seattle. With a Light Rail station right across the street, guests can easily explore Bellevue&rsquo;s renowned shopping and dining, or venture into Seattle&rsquo;s iconic neighborhoods and attractions. As always, the conference will be packed with meaningful programming designed to uplift and empower 1p36 families:<ul data-rte-list="default" fr-original-style='font-style: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-line: none; text-decoration-thickness: auto; text-decoration-style: solid; overflow-wrap: break-word; caret-color: rgba(0, 0, 0, 0.7); color: rgba(0, 0, 0, 0.7); font-family: "Noto Sans"; font-size: 17px;' style='font-style: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-line: none; text-decoration-thickness: auto; text-decoration-style: solid; overflow-wrap: break-word; caret-color: rgba(0, 0, 0, 0.7); color: rgba(0, 0, 0, 0.7); font-family: "Noto Sans"; font-size: 17px; box-sizing: inherit;'><li fr-original-style="list-style-type: none; overflow-wrap: break-word;" style="list-style-type: none; overflow-wrap: break-word; box-sizing: inherit;">--Expert-led presentations from medical professionals and specialists</li><li fr-original-style="list-style-type: none; overflow-wrap: break-word;" style="list-style-type: none; overflow-wrap: break-word; box-sizing: inherit;">--Breakout sessions tailored to different stages of development</li><li fr-original-style="list-style-type: none; overflow-wrap: break-word;" style="list-style-type: none; overflow-wrap: break-word; box-sizing: inherit;">--Fun and engaging activities for parents, siblings, and the whole family</li><li fr-original-style="list-style-type: none; overflow-wrap: break-word;" style="list-style-type: none; overflow-wrap: break-word; box-sizing: inherit;">--And most importantly&mdash;time to connect with fellow families who understand the journey</li></ul>These connections are the heart of the 1p36 DSA community, bringing together families from across the U.S. and beyond to share stories, support, and advocacy. 2026 conference hosts, the Shaw and Daggett Families, in collaboration with the 1p36 DSA Board, are working hard to organize and facilitate an incredibly memorable weekend!&nbsp; We have been able to secure a special 1p36 group room rate of $172 to $202 a night (taxes and fees not included) depending on whether you choose 1 King or 2 Queen beds. The hotel features a pool and offers complimentary basic high-speed, wireless internet in guestrooms and meeting spaces. On-site self-parking is free. The Sea-Tac airport is 16 miles away. The group rate is available for the nights of July 7-11, based on availability with limited availability on July 7th. Individual reservations can be made by calling hotel reservations at 425-455-1300 or online by <a fr-original-style="text-decoration-color:initial;user-select:auto;box-sizing:inherit;" href="https://www.hilton.com/en/book/reservation/deeplink/?ctyhocn=LION-HF&groupCode=1P36CI&arrivaldate=2026-07-08&departuredate=2026-07-12&cid=OM,WW,HILTONLINK,EN,DirectLink&fromId=HILTONLINKDIRECT" 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 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 Bellevue for an unforgettable conference experience! For more information about Washington sites and attractions, please visit:<ul data-rte-list="default" fr-original-style='font-style: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-line: none; text-decoration-thickness: auto; text-decoration-style: solid; overflow-wrap: break-word; margin-bottom: 0px; caret-color: rgba(0, 0, 0, 0.7); color: rgba(0, 0, 0, 0.7); font-family: "Noto Sans"; font-size: 17px;' id="isPasted" style='font-style: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-line: none; text-decoration-thickness: auto; text-decoration-style: solid; overflow-wrap: break-word; margin-bottom: 0px; caret-color: rgba(0, 0, 0, 0.7); color: rgba(0, 0, 0, 0.7); font-family: "Noto Sans"; font-size: 17px; box-sizing: inherit;'><li fr-original-style="list-style-type: none; overflow-wrap: break-word;" style="list-style-type: none; overflow-wrap: break-word; box-sizing: inherit;"><a fr-original-style="" href="https://www.hilton.com/en/hotels/lion-hf-hilton-bellevue/" rel="noopener noreferrer" style="text-decoration-color: initial; user-select: auto; box-sizing: inherit;" target="_blank">Hilton Bellevue Hotel Info</a></li><li fr-original-style="list-style-type: none; overflow-wrap: break-word;" style="list-style-type: none; overflow-wrap: break-word; box-sizing: inherit;"><a fr-original-style="" href="https://www.visitbellevuewa.com/" rel="noopener noreferrer" style="text-decoration-color: initial; user-select: auto; box-sizing: inherit;" target="_blank">Things to Do in Bellevue</a></li><li fr-original-style="list-style-type: none; overflow-wrap: break-word;" style="list-style-type: none; overflow-wrap: break-word; box-sizing: inherit;"><a fr-original-style="" href="https://visitseattle.org/" rel="noopener noreferrer" style="text-decoration-color: initial; user-select: auto; box-sizing: inherit;" target="_blank">Seattle Attractions &amp; Events</a></li><li fr-original-style="list-style-type: none; overflow-wrap: break-word;" style="list-style-type: none; overflow-wrap: break-word; box-sizing: inherit;"><a fr-original-style="" href="https://stateofwatourism.com/" rel="noopener noreferrer" style="text-decoration-color: initial; user-select: auto; box-sizing: inherit;" target="_blank">Washington State Travel Guide</a></li></ul> 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);">Conference T-shirt for attendees 2 and up (all attendees with 1p36 deletion syndrome will receive a shirt regardless of age)</li></ul> REGISTRATION ENDS June 14th, No refunds past June 16th.

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 18th Annual 1p36 Deletion Support &amp; Awareness conference in Seattle, WA. 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&rsquo;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&rsquo;s name-Age during the conference dates-City &amp; State that he/she is from-Share a &quot;new height&quot; that your 1p36 Champion has met this last year For up to the minute updates, please follow our <a fr-original-style="text-decoration-color:initial;user-select:auto;box-sizing:inherit;" href="https://www.facebook.com/events/834165946074286" rel="noopener noreferrer" style="text-decoration-color:initial;user-select:auto;box-sizing:inherit;" target="_blank">Facebook conference event page</a> We can&#39;t wait to see you! Ken ShirtcliffPresident, 1p36 Deletion Support &amp; Awarenessk.shirtcliff@1p36dsa.org

Welcome to the 18th annual 1p36 Deletion Support &amp; Awareness Conference, set to take place in the beautiful Pacific Northwest, from July 9-11, 2026. We are thrilled to gather once again as a community to share knowledge, support one another, and raise awareness about 1p36 deletion syndrome. Whether you’re arriving early or staying late, the region offers endless opportunities for recreation and family fun. From the majestic Cascade Mountains to the sparkling Puget Sound, evergreen forests, and crystal-clear lakes, the natural beauty of Washington is the perfect backdrop for this unforgettable event. We’ll convene at the beautiful Hilton Bellevue, located in Seattle’s vibrant eastside. Nestled in Bellevue’s bustling business district, the Hilton Bellevue offers spacious accommodations and is just 10 miles from downtown Seattle. With a Light Rail station right across the street, guests can easily explore Bellevue’s renowned shopping and dining, or venture into Seattle’s iconic neighborhoods and attractions. As always, the conference will be packed with meaningful programming designed to uplift and empower 1p36 families:<ul><li>--Expert-led presentations from medical professionals and specialists</li><li>--Breakout sessions tailored to different stages of development</li><li>--Fun and engaging activities for parents, siblings, and the whole family</li><li>--And most importantly—time to connect with fellow families who understand the journey</li></ul>These connections are the heart of the 1p36 DSA community, bringing together families from across the U.S. and beyond to share stories, support, and advocacy. 2026 conference hosts, the Shaw and Daggett Families, in collaboration with the 1p36 DSA Board, are working hard to organize and facilitate an incredibly memorable weekend!  We have been able to secure a special 1p36 group room rate of $172 to $202 a night (taxes and fees not included) depending on whether you choose 1 King or 2 Queen beds. The hotel features a pool and offers complimentary basic high-speed, wireless internet in guestrooms and meeting spaces. On-site self-parking is free. The Sea-Tac airport is 16 miles away. The group rate is available for the nights of July 7-11, based on availability with limited availability on July 7th. Individual reservations can be made by calling hotel reservations at 425-455-1300 or online by <a href="https://www.hilton.com/en/book/reservation/deeplink/?ctyhocn=LION-HF&amp;groupCode=1P36CI&amp;arrivaldate=2026-07-08&amp;departuredate=2026-07-12&amp;cid=OM,WW,HILTONLINK,EN,DirectLink&amp;fromId=HILTONLINKDIRECT" 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 Bellevue for an unforgettable conference experience! For more information about Washington sites and attractions, please visit:<ul><li><a href="https://www.hilton.com/en/hotels/lion-hf-hilton-bellevue/" target="_blank">Hilton Bellevue Hotel Info</a></li><li><a href="https://www.visitbellevuewa.com/" target="_blank">Things to Do in Bellevue</a></li><li><a href="https://visitseattle.org/" target="_blank">Seattle Attractions &amp; Events</a></li><li><a href="https://stateofwatourism.com/" target="_blank">Washington State Travel Guide</a></li></ul> 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>Conference T-shirt for attendees 2 and up (all attendees with 1p36 deletion syndrome will receive a shirt regardless of age)</li></ul> REGISTRATION ENDS June 14th, No refunds past June 16th.

1p36 Deletion Support & Awareness

18th Annual 1p36 Deletion Support & Awareness Conference

300 112th Ave SE