Hermanowski Family Foundation Initial Request Form<\/p>\n
Organization Name: Tatton Brown Rahman Syndrome Community
\nLegal Name (if Different): Tatton Brown Rahman Syndrome Community Inc
\nAlso Known As: TBRS Community
\nMailing Address: 122 Hunns Lake Road
\nCity: STANFORDVILLE
\nState: NY
\nPostal Code: 12581
\nMain Phone: 8452643016
\nMain Fax:
\nOrganization Website: www.tbrsyndrome.org
\nEmployer ID Number: 81-2216511
\nOrganization Tax Status: 501c3<\/p>\n
Proposal Information<\/p>\n
Today’s Date: 3\/31\/2025
\nRequested Amount: 10,000<\/p>\n
Project Title: TBRS Youth Social and Mental Wellness Program
\nProject Description:<\/p>\n
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.<\/p>\n
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.<\/p>\n
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.<\/p>\n
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.<\/p>\n
Total Project Budget: $20,000<\/p>\n
Other Funding
\nSources For The Project (Committed & Potential): Individual donations<\/p>\n
Project Duration: 1 year (10\/1\/2025 – 9\/30\/2026)
\nGeographical Area Served: Families across the United States
\nAge Group To Be Served: Focus on Birth to 21 (and their caregivers)<\/p>\n
Contact Information<\/p>\n
Contact Prefix (Mr,Mrs etc.): Ms
\nContact First Name: Jill
\nContact Last Name: Kiernan
\nContact Title: Executive Director
\nContact Phone: 845 264 3016
\nContact Email: jill@tbrsyndrome.org<\/p>\n","protected":false},"excerpt":{"rendered":"
Hermanowski Family Foundation Initial Request Form 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 […]<\/p>\n","protected":false},"author":5,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[3],"tags":[],"class_list":["post-8106","post","type-post","status-publish","format-standard","hentry","category-grants"],"_links":{"self":[{"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=\/wp\/v2\/posts\/8106","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=\/wp\/v2\/users\/5"}],"replies":[{"embeddable":true,"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=8106"}],"version-history":[{"count":1,"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=\/wp\/v2\/posts\/8106\/revisions"}],"predecessor-version":[{"id":8107,"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=\/wp\/v2\/posts\/8106\/revisions\/8107"}],"wp:attachment":[{"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=8106"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=8106"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=8106"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}