Hermanowski Family Foundation Initial Request Form

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Organization Name: Tatton Brown Rahman Syndrome Community
Legal Name (if Different): Tatton Brown Rahman Syndrome Community Inc
Also Known As: TBRS Community
Mailing Address: 122 Hunns Lake Road
City: STANFORDVILLE
State: NY
Postal Code: 12581
Main Phone: 8452643016
Main Fax:
Organization Website: www.tbrsyndrome.org
Employer ID Number: 81-2216511
Organization Tax Status: 501c3

Proposal Information

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Today’s Date: 3/31/2025
Requested Amount: 10,000

Project Title: TBRS Youth Social and Mental Wellness Program
Project Description:

The TBRS Community is a patient-led nonprofit supporting families affected by Tatton Brown Rahman Syndrome (TBRS), a rare genetic disorder identified in 2014. Initially, the condition was poorly understood, characterized only by intellectual disability, overgrowth, and distinctive facial features, leaving families isolated and uncertain about their children’s future.

Our organization united a global community of families, researchers, and clinicians, significantly expanding our understanding of TBRS. Our research revealed that, beyond intellectual disability, TBRS involves psychiatric disorders, severe anxiety, social isolation, behavioral challenges, cancer predisposition, seizures, and life-threatening cardiac conditions. Families impacted by rare diseases often experience profound isolation; local communities lack awareness, specialized resources are limited, and meaningful peer connections are scarce. These barriers substantially impact mental health, self-esteem, and overall quality of life.

To address this critical need, we seek $10,000 from the Hermanowski Family Foundation to launch the TBRS Youth Social and Mental Wellness Program. This initiative will offer professionally guided social-emotional workshops, therapeutic group sessions, and individualized support specifically designed for youth and young adults living with TBRS. Sessions will focus on emotional resilience, social integration, and coping strategies for anxiety, medical trauma, and isolation. The program will also equip caregivers with essential tools to support their children’s emotional well-being and peer relationships.

Programs addressing the unique emotional challenges faced by youth with rare diseases are uncommon yet transformative, fostering resilience, reducing isolation, and significantly improving life quality. With your support, we can ensure young individuals affected by TBRS gain the emotional strength and community connections they need to thrive, overcoming barriers too often defining rare-disease experiences.

Total Project Budget: $20,000

Other Funding
Sources For The Project (Committed & Potential): Individual donations

Project Duration: 1 year (10/1/2025 – 9/30/2026)
Geographical Area Served: Families across the United States
Age Group To Be Served: Focus on Birth to 21 (and their caregivers)

Contact Information

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Contact Prefix (Mr,Mrs etc.): Ms
Contact First Name: Jill
Contact Last Name: Kiernan
Contact Title: Executive Director
Contact Phone: 845 264 3016
Contact Email: jill@tbrsyndrome.org