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 Rd
City: Stanfordville
State: NY
Postal Code: 12581
Main Phone: (845) 264-3016
Main Fax: N/A
Organization Website: https://tbrsyndrome.org/
Employer ID Number: 81-2216511
Organization Tax Status: 501 c3

Proposal Information

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Today’s Date: 3/27/23
Requested Amount: $10,000

Project Title: TBRS Summit Patient and Family Travel Scholarships
Project Description:

Tatton Brown Rahman Syndrome (TBRS) is a rare, neurodevelopmental disorder that affects almost every system in the body. Affected individuals struggle with the isolation of having a relatively unheard of rare disease, while facing a diagnosis that makes them 250 times more likely to develop cancer. 100% of people with TBRS have intellectual disability. Other health impacts include seizures, cardiac issues, orthopedic problems, and blood-related issues. As a result, education and support are crucial for these individuals.

We would like to offer Travel Scholarships to patients and families with TBRS to allow them to attend the 2023 TBRS Summit. These scholarships will be offered to those with the need for financial support. The Summit offers a unique opportunity for patients to interface with researchers, and we want to ensure there is no financial impediment to attendance. Having patients in attendance to speak with researchers and clinicians will not only educate them on resources and information from a scientific perspective, but also allows patients to educate others on the personal perspectives of life with TBRS. Additionally, we have planned family-friendly educational events, including presentations from scientists, long Q&A panels to enable patients to ask questions in a comfortable environment, family and researcher poster sessions, and assistance in accessing the resources TBRS Community provides to patients.

The TBRS Summit will be held in San Antonio, TX, at Morgan’s Wonderland. Morgan’s Wonderland is committed to accessibility for individuals with disabilities, which provides our patients with a comfortable and accommodating environment for the conference. We will offer virtual access for patients that are not able to attend, but it is crucial to have patients in attendance for their own educational, emotional, and personal benefit. Support from the Hermanowski Family Foundation would go a long way to supporting patients in an immediate, tangible way.

Total Project Budget: $75,000

Other Funding
Sources For The Project (Committed & Potential): Committed: Morgan’s Wonderland $20,000, CZI Rare As One Grant $15,000; Potential: WITH Foundation Open Grant $30,000, Horizon Therapeutics #RAREis Global Advocate Grant $5,000

Project Duration: Thursday 10/12 – Sunday 10/15 (4-5 days with travel)
Geographical Area Served: United States; Families are located throughout the globe, with more than 50% of our population being from the United States. Patients outside of the United States will be supported by other grants and TBRS Community funding.
Age Group To Be Served: Patients between the ages of 0 and 21 will be served by these travel grants. Due to the relatively new discovery of TBRS, most patients are children and young adults (80% of patients are ages 21 or under). Individuals over 21 will be served by other grants and TBRS Community funding.

Contact Information

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