News – Page 2 – TBRS Community

Save the Date: The 2026 TBRS Summit at Morgan’s Wonderland Camp!

We are thrilled to announce that the 2026 TBRS Summit will take place the weekend of March 21st, 2026, at the one-of-a-kind Morgan’s Wonderland Camp in San Antonio, Texas! This incredible, fully accessible camp is designed to ensure that everyone can experience adventure, connection, and joy.

What Makes the TBRS Summit So Special?

The TBRS Summit is where our community comes together to learn, grow, and build lasting friendships. It’s a unique opportunity for families, researchers, and clinicians to connect in a supportive, welcoming environment. Our goal for 2026 is to make the Summit even more meaningful by increasing access to clinical specialists, providing more time for shared experiences, and making sure there’s plenty of fun along the way!

A Camp Designed for Everyone

Morgan’s Wonderland Camp is a dream location for our Summit. Built with accessibility at its core, the camp offers a wide range of adaptive and inclusive activities that ensure everyone can participate:

Zip-lining and high ropes with full adaptive support
Swimming and splash pads in an accessible aquatic center
Horseback riding with specialized saddles and assistance
Fishing, archery, and nature trails designed for all mobility levels
Campfires, arts and crafts, and interactive group activities

This setting gives our families the chance to experience new adventures without limits, in a safe and fully supportive environment.

A Focus on Clinical Care and Community

One of our biggest goals for the 2026 Summit is to increase clinical engagement so families can get expert insights into TBRS care. We’re working to bring in more clinical specialists, therapists, and researchers who can provide hands-on learning sessions, Q&A panels, and one-on-one consultations. We also want to leave plenty of time for families to share their experiences, exchange knowledge, and support one another.

What to Expect

The weekend will include:
✅ Research & Clinical Updates – Learn about the latest advancements in TBRS care and treatment
✅ Breakout Sessions & Panels – Connect with experts on key topics like cardiac care, behavior strategies, and genetic research
✅ Parent & Caregiver Discussions – Open conversations about advocacy, navigating healthcare, and building support networks
✅ Family Fun & Connection – Time to relax, play, and create unforgettable memories with other TBRS families

Stay Tuned for More Details!

We can’t wait to welcome you to Morgan’s Wonderland Camp for an unforgettable TBRS Summit experience! More details, including registration, accommodations, and agenda updates, will be shared soon—so stay tuned!

📅 Save the Date: March 21st, 2026
📍 Morgan’s Wonderland Camp | San Antonio, TX

This is going to be our best Summit yet, and we hope to see you there! 💙

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Join the TBRS Exercise Challenge: Move for a Cause!

News / kit

The TBRS Exercise Challenge is more than just a fundraiser—it’s a movement that brings our community together to make a real difference in the lives of people with Tatton Brown Rahman Syndrome (TBRS). Launched in 2020 by Ashley Hatton, a person with TBRS, this annual event encourages participants to set personal fitness goals while raising money to fund essential programs for the TBRS Community.

Why It Matters

Every dollar raised through the TBRS Exercise Challenge helps fund education, support, and research. This year, we’re focused on two critical initiatives:

Creating a clinical series to educate doctors and families on best practices for TBRS care.
Formalizing surveillance and treatment guidelines to improve medical care and outcomes for individuals with TBRS.

With over 200 participants in our patient registry, we’re learning more than ever before about the medical needs of individuals with TBRS—and your support helps turn that knowledge into action.

How to Get Involved

Set Your Challenge: Choose an activity—walk, run, swim, cycle, dance, or any movement that gets you moving!
Fundraise: Create a personal fundraising page and ask friends, family, and coworkers to support your efforts.
Share Your Journey: Post your progress on social media with #TBRSExerciseChallenge to inspire others.
Donate: Not ready to participate? You can still make a difference by donating to the cause.

Make an Impact Today!

Every step, pedal, and jump brings us closer to a brighter future for those living with TBRS. Join the movement, challenge yourself, and be part of something bigger!

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TBRS Community looks for a Treasurer

News / kit

TBRS Community is looking for a Treasurer!

We’re searching for a dedicated Treasurer to join our Board of Directors! This is a volunteer, remote position where you can use your financial expertise to make a real impact on families affected by TBRS. As Treasurer, you’ll help ensure our organization’s financial sustainability, allowing us to continue making a difference.

Key Responsibilities:

Oversee financial management & reporting
Maintain accurate financial records
Help prepare the annual budget
Provide financial guidance to the Board

If you or someone you know has experience in finance, accounting, or nonprofit management, we’d love to hear from you! Questions? Email [email protected]

Thank you for helping us strengthen our community!

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TBRS Community’s Impact Report: A Look at How Far We’ve Come

News / kit

We are thrilled to announce the release of our first-ever Impact Report, a comprehensive look at the progress we’ve made together as a community. This special edition covers multiple years of our work, highlighting our research agenda, funded projects, collaboration with the Overgrowth Syndromes Alliance, accomplishments during the CZI Rare As One grant, and our vision for the future. It also includes a transparent breakdown of our financials and a recap of our fundraising efforts.

This report is a testament to the power of patient-driven research and the incredible support of families, researchers, and advocates. Thank you for being a part of our journey—your support drives real change for individuals and families affected by TBRS!

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Connecting Across the Globe: TBRS Community Postcard Exchange

News / kit

Our recent TBRS Community Postcard Exchange was a great success, bringing families together from all corners of the world! The idea was simple: send out postcards and receive postcards in return. Each family participated in their own way—some sent postcards to everyone on the list, while others randomly chose their recipients.

In total, 35 families participated in this exciting event! Although not all families took photos of their postcards, the joy of receiving a personal note from another TBRS family was the highlight of the exchange. We hope this fun event helped bring a little extra warmth to everyone’s day!

Thank you to all the families who participated, and thanks to Jane Hatton for organizing this event!

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Leave a Lasting Legacy with the TBRS Community. Join the Dorothy G. Hatton Legacy Society.

News / kit

As we look to the future of the Tatton Brown Rahman Syndrome (TBRS) Community, we invite you to consider a powerful way to make a lasting impact: legacy giving. By including the TBRS Community in your will or estate plans, you can create a legacy that will continue to support our mission for generations to come. We are proud to introduce the Dorothy G. Hatton Legacy Society, named in honor of a cherished TBRS grandma who was the first person to ever include the TBRS Community in her planned giving. Her vision and generosity inspired the creation of this society, which now invites others to follow in her footsteps.

The Impact of Legacy Giving on the TBRS Community

Legacy gifts play a crucial role in ensuring the long-term sustainability of the TBRS Community. These gifts allow us to continue our work in providing essential resources, supporting families affected by TBRS, and advancing critical research toward treatment development. Legacy giving helps us to expand our programs, increase our outreach, and offer hope to those living with TBRS. By including the TBRS Community in your estate plans, you are helping to secure a brighter future for everyone impacted by this rare condition.

Financial and Tax Advantages for Donors

In addition to making a significant impact on our community, legacy giving offers several financial and tax advantages for donors:

**Estate Tax Reduction:** Including charitable bequests in your will can reduce the overall tax liability of your estate. In many cases, the amount left to a charitable organization like the TBRS Community can be deducted from the estate’s value, potentially lowering the estate tax burden.
**Income Tax Benefits:** Depending on your financial situation, certain types of legacy gifts may offer immediate income tax benefits. For example, gifts made through charitable remainder trusts can provide income to you or your beneficiaries during your lifetime, with the remainder going to the TBRS Community, potentially resulting in significant tax savings.
**Flexibility and Control:** Legacy gifts can be tailored to meet your financial goals and philanthropic desires. Whether you choose to leave a specific amount, a percentage of your estate, or even a particular asset, you can ensure that your gift aligns with your values and intentions.
**Enduring Legacy:** Your gift will have a lasting impact, ensuring that the TBRS Community continues to thrive and support future generations. Becoming a member of the Dorothy G. Hatton Legacy Society means that your legacy will live on, reflecting your commitment to making a difference.

Join the Dorothy G. Hatton Legacy Society

By leaving a legacy gift to the TBRS Community, you will join a dedicated group of supporters in the Dorothy G. Hatton Legacy Society. This society honors those who have made a commitment to the future of the TBRS Community through planned giving. Members of the society will receive special recognition on our website and at community events, updates on the impact of their gifts, and invitations to exclusive events.

We encourage you to consider this meaningful way to support the TBRS Community. Your legacy gift, no matter the size, will make a profound difference in the lives of those affected by TBRS. For more information on how to include the TBRS Community in your estate plans, please contact us at [email protected] or click the button below. Together, we can create a lasting legacy of hope and support for the TBRS Community.

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