Grant Used to Advance Care, Knowledge, and Connection Through Clinical Education

The TBRS Community is proud to share the impact of a $20,000 grant from the Gordon Hartman Family Foundation, which supported the expansion of our Clinical Education Series and strengthened critical resources for families and clinicians navigating Tatton Brown Rahman Syndrome (TBRS). This grant directly addressed those gaps by transforming emerging research into practical, accessible education and community resources.

“Families affected by TBRS are often asked to become experts overnight, without access to clear or consistent guidance,” said Jill Kiernan, Founder and Executive Director of the TBRS Community. “Support from the Gordon Hartman Family Foundation allowed us to bring the latest research directly to families and clinicians, translate it into practical care guidance, and ensure that people around the world could access this information when they needed it most.”

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Expanding Clinical Education and Outreach

With support from the Gordon Hartman Family Foundation, the TBRS Community hosted multiple live, virtual education and outreach sessions focused on issues most relevant to individuals with TBRS and their care teams. Topics included:

• Cardiac risks and surveillance
• Cancer and leukemia
• Mosaicism in TBRS
• The current state of gene therapy research
• The TBRS Disease Concept Model, capturing how TBRS affects individuals and caregivers

These sessions brought together families, clinicians, and researchers from around the world, fostering shared learning, meaningful discussion, and deeper understanding of the evolving TBRS care landscape.

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Increasing Global Access to Education

To ensure families everywhere could participate, the TBRS Community provided live translation during webinars, enabling real-time engagement from multiple countries. Recordings and educational materials were also made available afterward, allowing families and clinicians to access trusted information at their own pace.

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Launching a New TBRS Community Website

Grant funding also supported the launch of a redesigned TBRS Community website, now serving as a centralized hub for up-to-date TBRS information. The site includes:

• Updated clinical and surveillance information
• Downloadable TBRS fact sheets for families and providers
• Easy access to educational recordings and resources

This platform helps ensure families and clinicians can quickly find reliable, current guidance.

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Building Connection Through TBRS Family Connect

Beyond education, the grant helped launch TBRS Family Connect, a secure, TBRS-administered online community designed to foster peer connection. This space allows families to share experiences, exchange resources, and find support—reducing isolation and strengthening community bonds.

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With Gratitude

We are deeply grateful to the Gordon Hartman Family Foundation for their partnership and trust. Their support has expanded access to knowledge, strengthened care, and built meaningful connections for individuals and families living with TBRS around the world!