Treacher Collins Connection

**Context Profile for Treacher Collins Connection**

1. **Organization Mission & Cause:**
   - The Treacher Collins Connection (TCN) is dedicated to supporting individuals and families affected by Treacher Collins syndrome (TCS), a genetic craniofacial condition. Their mission is to create a supportive community through retreats and events that foster connection, understanding, and empowerment for those impacted by TCS and similar syndromes. The organization aims to raise awareness, provide resources, and offer a platform for sharing experiences and support.

2. **Type of Activities:**
   - **Retreats:** TCN organizes retreats for individuals and families affected by TCS, providing a space for networking, education, and support.
   - **Fundraising Campaigns:** They conduct fundraising activities to support their retreats and other initiatives, such as "Judy's Birthday Fundraiser for Treacher Collins Network Retreat."
   - **Community Programs:** TCN engages in community-building activities that include medical presentations, specialized care, and entertainment during retreats.
   - **Advocacy and Awareness:** They work to raise awareness about TCS and similar conditions through various channels.

3. **Tone of Voice:**
   - The tone of TCN is friendly, compassionate, and inspiring. They emphasize community, support, and the positive impact of collective efforts. The language is inclusive and encouraging, often appealing to the emotions and sense of community among their audience.

4. **Emoji Usage:**
   - TCN uses emojis sparingly but effectively to add warmth and emphasis to their communications. For example, they use stars (🌟) to highlight fundraising efforts and create a sense of excitement and positivity.

5. **Key Facts:**
   - **Founding Info:** TCN has been hosting retreats since 2001.
   - **Scale:** The organization is managed by two volunteers, highlighting its grassroots nature.
   - **Impact Metrics:** They have hosted numerous retreats, impacting families across the U.S. and internationally, fostering lifelong connections among attendees.
   - **Volunteer Info:** The organization relies on volunteers for various roles, including event management and fundraising.

6. **Writing Guidelines:**
   - **Style:** Maintain a warm, inclusive, and supportive tone. Use language that is accessible and empathetic, focusing on community and shared experiences.
   - **Structure:** Use clear and concise sentences. Incorporate calls to action that encourage donations, sharing, and volunteering.
   - **Visuals:** Include images and videos that depict the community and events, enhancing the emotional appeal.
   - **Engagement:** Encourage interaction through social media sharing and personal stories to amplify the message.
   - **Personalization:** Use personalized elements in communications, such as addressing recipients by their first name in emails, to foster a sense of connection.

This context profile provides a comprehensive understanding of Treacher Collins Connection, enabling AI assistants to generate content that aligns with the organization’s mission, tone, and activities.

LXCL:Admission for 1 Device. ------ PLEASE NOTE: For every device you intend to sign in with, please register once.

General Admission

Here&#39;s the information for the 2026 virtual Treacher Collins Network Retreat!&nbsp;This year&#39;s gathering is for families with Treacher Collins, MFDM, and Nager syndromes. It will be held Friday, August 21st through Sunday, August 23rd online through Zoom! Below is a list of current presenters- more details about their presentations will be shared. We will also share the full schedule of the weekend once we align everyone&#39;s calendars. We are currently planning to start on 8/21 at 7pm EST and end at 9pm. We will start up again Saturday morning and end by 6pm EST. There will be breaks throughout the day for meals and between presenters. Each presentation will last from 45 to 90 minutes, including a question and answer period. Medical Presentations:<ul fr-original-style="" style="box-sizing: inherit;"><li fr-original-style="" id="isPasted" style="box-sizing: inherit;">Dr. Jesse Taylor &mdash; Craniofacial/Oral Surgeon &mdash; Surgeon-in-Chief, Children&#39;s Hospital of Philadelphia (CHOP); Chief, Division of Plastic, Reconstructive and Oral Surgery; Co-Director, Craniofacial Program.</li><li fr-original-style="" style="box-sizing: inherit;">Dr. Paul Trainor &mdash; Genetics &mdash; Investigator, Stowers Institute for Medical Research; will present on genetics for TCS, Nager, and MFDM syndromes.</li><li fr-original-style="" style="box-sizing: inherit;">Dr. Daniel Jensen &mdash; ENT &mdash; Pediatric Otolaryngologist, Children&#39;s Mercy Hospital, Kansas City, MO; board certified in Complex Pediatric Otolaryngology and Airways.</li><li fr-original-style="" style="box-sizing: inherit;">Dr. Kristin Dilaj &mdash; Audiologist &mdash; Co-Director and Audiologist, New England Center for Hearing Rehabilitation.</li><li fr-original-style="" style="box-sizing: inherit;">Dr. Ivana Marinac -&nbsp;ENT&ndash;Otologist; Co-Director, ENT Department, County Hospital Čakovec, Croatia; Fellow of the European Board of Otorhinolaryngology&ndash;Head and Neck Surgery (FEBORL-HNS).</li><li fr-original-style="" style="box-sizing: inherit;">Dr. Kevan O&#39;Neill &mdash; Orthodontist&mdash; DDS, Craniofacial Surgery fellowship, NYU School of Medicine; practices at Dayton Children&#39;s Hospital.</li></ul>Additional Presentations:<ul fr-original-style="" style="box-sizing: inherit;"><li fr-original-style="" id="isPasted" style="box-sizing: inherit;">Dr. Kathleen Bogart, Director of Disability and Social Interaction Lab, Oregon State University with Marisa Krauter, PhD Candidate.</li><li fr-original-style="" id="isPasted" style="box-sizing: inherit;">Dr. Edgar Woznica &mdash; Psychiatrist, will lead workshop for parents of children with TCS, including breakout rooms.</li><li fr-original-style="" id="isPasted" style="box-sizing: inherit;">Michaela Mulroe: Author of Unconditionally Confident (<a fr-original-style="" href="https://tinyurl.com/4p9eawac" id="isPasted" rel="noopener noreferrer" style="text-decoration-color: currentcolor; user-select: auto; box-sizing: inherit;" target="_blank">https://tinyurl.com/4p9eawac</a>)</li><li fr-original-style="" id="isPasted" style="box-sizing: inherit;">Garrett McNally - Actor, portrayed Auggie in Wonder the Musical</li><li fr-original-style="" id="isPasted" style="box-sizing: inherit;">Workshops for people with TCS, including breakout rooms.</li><li fr-original-style="" id="isPasted" style="box-sizing: inherit;">Additional workshops to be determined.</li></ul>* Specific Medical Presentation times will be updated and emailed to you closer to the event. Registration Fee:The registration fee includes a Zoom link for every session taking place during the weekend. When you register, the software will default to adding a % donation to your registration fee (for the free processing this Zeffy site uses). You can choose $0 or choose &#39;Other&#39; and type in a lower amount. To clarify, we do not receive any of these donations.--------------If you have any questions, please text Judy at 704-201-9720 or email Tom at <a fr-original-style="" href="mailto:tcsretreat@gmail.com" style="text-decoration-color: currentcolor; user-select: auto; box-sizing: inherit;" target="_blank">tcsretreat@gmail.com</a>.

Hi <span contenteditable="false" data-custom-variable="{{firstname}}" fr-original-class="fr-deletable styled-tag-chip" fr-original-style="" style="color: rgb(42, 42, 196); overflow-wrap: anywhere; user-select: none; background-color: rgb(248, 248, 255); border: 1px solid rgb(191, 191, 255); border-radius: 4px; margin: 0px; padding: 1px 8px; font-size: 11px; display: inline-block; box-sizing: inherit;">First name, Thank you for registering for our event and supporting our cause. Your registration greatly helps our mission. 🚀 If you would like to contribute further, contact us to become a volunteer, or talk to your friends about our cause! Ryan Bellrjb6373@gmail.com

Here's the information for the 2026 virtual Treacher Collins Network Retreat! This year's gathering is for families with Treacher Collins, MFDM, and Nager syndromes. It will be held Friday, August 21st through Sunday, August 23rd online through Zoom! Below is a list of current presenters- more details about their presentations will be shared. We will also share the full schedule of the weekend once we align everyone's calendars. We are currently planning to start on 8/21 at 7pm EST and end at 9pm. We will start up again Saturday morning and end by 6pm EST. There will be breaks throughout the day for meals and between presenters. Each presentation will last from 45 to 90 minutes, including a question and answer period. Medical Presentations:<ul><li>Dr. Jesse Taylor — Craniofacial/Oral Surgeon — Surgeon-in-Chief, Children's Hospital of Philadelphia (CHOP); Chief, Division of Plastic, Reconstructive and Oral Surgery; Co-Director, Craniofacial Program.</li><li>Dr. Paul Trainor — Genetics — Investigator, Stowers Institute for Medical Research; will present on genetics for TCS, Nager, and MFDM syndromes.</li><li>Dr. Daniel Jensen — ENT — Pediatric Otolaryngologist, Children's Mercy Hospital, Kansas City, MO; board certified in Complex Pediatric Otolaryngology and Airways.</li><li>Dr. Kristin Dilaj — Audiologist — Co-Director and Audiologist, New England Center for Hearing Rehabilitation.</li><li>Dr. Ivana Marinac - ENT–Otologist; Co-Director, ENT Department, County Hospital Čakovec, Croatia; Fellow of the European Board of Otorhinolaryngology–Head and Neck Surgery (FEBORL-HNS).</li><li>Dr. Kevan O'Neill — Orthodontist— DDS, Craniofacial Surgery fellowship, NYU School of Medicine; practices at Dayton Children's Hospital.</li></ul>Additional Presentations:<ul><li>Dr. Kathleen Bogart, Director of Disability and Social Interaction Lab, Oregon State University with Marisa Krauter, PhD Candidate.</li><li>Dr. Edgar Woznica — Psychiatrist, will lead workshop for parents of children with TCS, including breakout rooms.</li><li>Michaela Mulroe: Author of Unconditionally Confident (<a href="https://tinyurl.com/4p9eawac" target="_blank">https://tinyurl.com/4p9eawac</a>)</li><li>Garrett McNally - Actor, portrayed Auggie in Wonder the Musical</li><li>Workshops for people with TCS, including breakout rooms.</li><li>Additional workshops to be determined.</li></ul>* Specific Medical Presentation times will be updated and emailed to you closer to the event. Registration Fee:The registration fee includes a Zoom link for every session taking place during the weekend. When you register, the software will default to adding a % donation to your registration fee (for the free processing this Zeffy site uses). You can choose $0 or choose 'Other' and type in a lower amount. To clarify, we do not receive any of these donations.--------------If you have any questions, please text Judy at 704-201-9720 or email Tom at <a href="mailto:tcsretreat@gmail.com" target="_blank">tcsretreat@gmail.com</a>.

Treacher Collins Connection

Treacher Collins Network Virtual Retreat

General Admission

$20

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