News – TBRS Community

Connecting Across the Globe: TBRS Community Postcard Exchange

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] of complete this short form. Together, we can create a lasting legacy of hope and support for the TBRS Community.

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

Need Help Interpreting Your Genetic Report?

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We are excited to announce the release of a new YouTube video designed to assist patients and families in understanding their genetic test reports!

This informative video breaks down the complex information found in most genetic reports, providing clear guidance on how to interpret the information provided and understand your genetic variant. Whether you have just received your results or are looking to support a loved one, this resource is tailored to help you navigate the world of genetic testing with ease.

Grab your genetic report and follow along with the video now!

Need Help Interpreting Your Genetic Report? Read More »

New Position: Community and Research Engagement (CARE) Manager

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We are excited to announce that Kit Church, previously our Research Coordinator, has had a recent position change to:

Community and Research Engagement (CARE) Manager for the TBRS Community!

Kit’s work with the TBRS Community has grown and evolved over the years and this new title better describes her position. Kit communicates with families, clinicians, and researchers. She identifies gaps in support for the global TBRS Community and addresses those gaps with new programming and resources. She creates materials to educate researchers and families on the importance of research involvement, and so much more!

Jill Kiernan, TBRS Community’s Executive Director says “Kit’s contributions are invaluable to our community. She not only develops incredible programs and maintains strong connections with our families and scientists, but she has also become an integral member of the TBRS Community Family. Her love for the families in our community shines through in her work, driving everything she does.”

“Thanks to the TBRS Community for providing me with this opportunity, and thank you to everyone for allowing me into your community!” Kit said. “I will do my best in my new role to provide support for all members of our global community, as well as continue to support the development of our research network. If you have any suggestions for programs that you would like to see, please reach out at [email protected]!”

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New Family Welcome Packet – A Great Resource for the Community

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The TBRS Community has designed a New Family Welcome Packet that contains all of the important information on participation in research, community programs, and current knowledge on TBRS.

This packet is designed to support the newly diagnosed, but contains important information for all families in the TBRS Community!

This resource is currently available in English and Spanish (Japanese coming soon), and we are always looking for more translations. Click the buttons below to download in your language!

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New Publication Highlights Collaborative Efforts for Understanding Epilepsy in Overgrowth-Intellectual Disability Syndromes

News / kit

The Tatton Brown Rahman Syndrome (TBRS) Community and the Malan Syndrome Foundation are proud to announce the publication of a significant new article, “Epilepsy and Overgrowth–Intellectual Disability Syndromes: A Patient Organization Perspective on Collaborating to Accelerate Pathways to Treatment.” This publication introduces the Overgrowth Syndromes Alliance (OSA), a collective effort between the TBRS Community and Malan Syndrome Foundation, uniting patient advocacy organizations and researchers to improve care and identify treatments for rare overgrowth–intellectual disability (OGID) syndromes.

The paper underscores the importance of a patient-first approach, focusing on the needs and priorities of the OGID community. It highlights the underrecognized occurrence of seizures within these syndromes. Additionally, it provides a valuable resource for patients to discuss appropriate screening and care with their primary care providers and neurologists.

The OSA aims to accelerate research and treatment development by fostering collaboration and shared goals among overgrowth patient organizations. This paper includes the OSA research roadmap, a guide that provides the framework for therapeutic development, as well as research tools essential for clinical trial readiness.

This publication is a milestone for the OGID community, offering hope and direction for future research and therapeutic advancements.

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Check out the OSA’s new brochure!

News / kit

Exciting news from the Overgrowth Syndromes Alliance!

The Overgrowth Syndromes Alliance (OSA), a collective effort between the TBRS Community and Malan Syndrome Foundation, uniting patient advocacy organizations and researchers to improve care and identify treatments for rare overgrowth–intellectual disability (OGID) syndromes.

We are thrilled to announce the release of a new informational brochure focused on overgrowth-intellectual disability (OGID) syndromes. This resource is dedicated to raising awareness for OGID syndromes, many of which are newly identified and require genetic testing to determine an underlying molecular cause.

We encourage TBRS Community families to download and share this valuable resource with your medical providers. Together, we can enhance understanding, provide better support, and improve care for affected individuals and their families.

Check out the OSA’s new brochure! Read More »

The TBRS Community welcomes Director of Development, Chelsea Spence

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Chelsea Spence joins the TBRS Community as the new Director of Development, bringing over thirteen years of dedicated experience in philanthropy, fundraising, and nonprofit management.

With a Master’s in Organizational Leadership specializing in Philanthropic Leadership from the University of Denver, Chelsea has a proven track record of driving growth and achieving fundraising targets through innovative campaigns, major gifts, and capital campaigns. Chelsea’s strategic expertise and commitment to developing meaningful relationships with donors are poised to significantly enhance the TBRS Community’s efforts in supporting individuals affected by Tatton Brown Rahman Syndrome. Chelsea is an outdoor enthusiast, enjoying Tennessee’s waterfalls and serving as a Girl Scout troop leader, nurturing the next generation of leaders.

We are excited to have Chelsea’s expertise to help guide the TBRS Community in fundraising and development efforts!

The TBRS Community welcomes Director of Development, Chelsea Spence Read More »

Celebrate Rare Disease Day by joining the TBRS Exercise Challenge as a participant

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We need you! Celebrate Rare Disease Day by joining the TBRS Exercise Challenge as a participant

In April 2024, the TBRS Community is raising $25,000 to accelerate the TBRS patient registry and drive treatments and a cure for TBRS.

The TBRS Challenge is a “Move-A-Thon” that raises money for TBRS while promoting a healthy lifestyle. Show your support – become a participant! Create your own team and promise to exercise for the month of April. Ask your friends and family to pledge their support by donating. Participants can choose what type of exercise they will do.

Your participation will help us expand the TBRS Patient Registry and get valuable patient data into the hands of our scientists and clinicians. By doing so, clinicians around the world will finally understand the symptoms associated with TBRS, create appropriate surveillance and treatment guidelines, and move the needle forward on developing treatment options for people affected by TBRS. We will also be able to identify more patients with TBRS, and provide proper support and care.

To start your own fundraising challenge page, visit the TBRS Exercise Challenge page. Scroll down a little and you will click on either “Fundraise” or “Join a Team” buttons. In just a few short steps you’ll be able to set up your personal fundraising page.

We aim to put the fun in fundraising! We will host a few friendly challenges throughout the month of April to rally our fundraising community. Be sure to pay attention to your emails throughout the month!

This fundraiser was thought up by our very own, Ashley Hatton! Thanks Ashley. You’re a true inspiration! Have questions? Need help setting up your page? We are here to help. Email [email protected]

Celebrate Rare Disease Day by joining the TBRS Exercise Challenge as a participant Read More »

Count Me In for TBRS – Call for Action!

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One of the most common questions we hear from patients, families, doctors, and researchers is, “How many people in the world have TBRS?” Count Me In for TBRS aims to provide an answer!

Count Me in for TBRS is our Contact Registry, which collects contact and demographic information from diagnosed individuals and families.

By gathering information from families, we can more accurately estimate how many people worldwide have TBRS. We can also provide researchers with more specific data, such as how many people have TBRS in a certain country, or what races or ethnicities are represented in our community. The contact information also allows the TBRS Community to contact families in the event of clinical trials if they so choose.

No personally identifiable information will be shared with outside parties (clinicians, researchers, pharma, etc.) without the family’s permission. Count Me In for TBRS also allows families to choose how they would like their information used. For instance, if a family does not want to share their location, they are not required to. Additionally, if a family does not wish to be contacted they can choose this option.

Participate in Count Me In for TBRS to help us understand how many families are affected worldwide. Participation only takes a few minutes, and it helps us support families and further research on TBRS! Click here to participate!

Count Me In for TBRS – Call for Action! Read More »