Author name: tbrsadm

We are excited to announce that the TBRS Community is now accepting applications for the TBRS Translation Accelerator Grant!

Two $50,000 grants will be awarded to support and accelerate therapeutic development for Tatton Brown Rahman Syndrome. Translational studies as well as basic science with clear translation potential are welcome. This includes a range of possible studies such as assay development for drug testing, biomarker development for diagnostics, model system refinement, and phenotypic characterization. A successful application should aim to address TBRS patient priories, namely neurocognitive deficits (i.e. intellectual disability, behavioral and communication challenges).

Applications are due by 11:59 PM EST on February 1, 2024. Please contact [email protected] with questions. Please see the attached application information for more details.

The TBRS community extends heartfelt gratitude to three remarkable families whose recent fundraising events have significantly contributed to TBRS research, education, and support.

Kacee Richter and her family organized a lively cornhole tournament in Texas, raising an impressive $45,000. Terra Clubine and her family also hosted a cornhole tournament in Kansas, gathering more than $27,000 for research through their event. These contributions are vital in advancing our understanding and treatment of TBRS.

The Glenn family led the ‘Stryker Strong’ Golf Tournament, which resulted in a generous donation of $25,000 to the TBRS Community. This family’s commitment exemplifies the power of community-driven initiatives, and helps to fund our education and support programs.

The funds raised by these families will significantly contribute to research projects aimed at unraveling the mysteries of TBRS, improving the lives of those affected. Their efforts serve as an inspiring example, demonstrating that when communities unite, they can make a substantial impact.

We encourage others to follow suit and explore creative ways to fundraise for the TBRS Community. Together, we can continue to improve the lives of those affected by TBRS. If you are interested in 1:1 coaching on how to host a family fundraising event, please reach out to [email protected]

We have an extraordinary opportunity for you to be a hero for those who need your support the most. Become a TBRS GEM (Giver Every Month)! TBRS families are dealing with the unknown, facing multiple health and developmental issues at the same time, and urgently need your help.

By becoming a recurring donor, you have the chance to make a significant impact in the lives of those who face TBRS by funding crucial research, providing vital resources, and ultimately, improving their quality of life.Our dedicated community of scientists, clinicians, and families is motivated and brilliant, and we need your financial support to turn our shared aspirations into reality.

Join us today!
Over the course of a year:

$10 per month allows us to host our TBRS Social and Support Groups
$25 per month funds the collection of one patient sample to our biorepository
$50 per month can send a TBRS Cares Package to 12 families in crisis per year
$100 per month provides the resources to maintain our virtual programming, including live interpretation, so we can be an inclusive, fully supportive global community
$250 per month pays for our TBRS Patient Registry platform for a year, increasing our understanding of TBRS that will lead to crucial developments such as surveillance guidelines and treatment options
$500 per month can create an iPSC line, a valuable research tool based on patient cells to help with projects like testing potential medications for use in people with TBRS

As a TBRS GEM, you will be featured on our website and social media, have access to TBRS GEM exclusive member update meetings, and receive a 10% discount to any of our paid events.

We have a goal of 25 recurring donors. The first 25 to sign up at any level of giving will receive a special gift.

Become a TBRS GEM here: https://tbrscommunity-bloom.kindful.com/?campaign=1214409

In the rare disease world, community engagement and effective communication are essential, and Erin Rooker has truly excelled in these areas. Erin’s tireless efforts in crafting compelling messages and engaging content has been instrumental in bringing the TBRS community closer together. Her passion for marketing has breathed new life into our initiatives and campaigns.

But Erin is more than just a marketing guru. She’s a project manager extraordinaire. Time and time again, she’s proven her ability to juggle multiple tasks, manage projects seamlessly, and ensure that everything runs like a well-oiled machine. Her attention to detail and organizational skills are second to none, making our community run smoothly and effectively.

One of Erin’s most remarkable qualities is her unwavering commitment. She’s always there, available at the drop of a hat, ready to lend a helping hand, provide guidance, or simply offer her warm and encouraging words. Her dedication to the TBRS Community’s success is truly remarkable and inspiring.

What’s even more astonishing is that she manages all of this while holding down a full-time job and raising her beautiful daughter, Morgan. It’s a testament to her incredible work ethic, time management skills, and the immense love and care she pours into every aspect of her life.

Erin’s passion and dedication have not gone unnoticed. She has made a huge mark on the TBRS community. Thank you, Erin!