The Rare Sisters Batten Foundation will help further the development of medical research for treatments and cures for CLN3 Batten Disease, and provide monetary assistance to families with children diagnosed with Batten Disease.
Rare Sisters Batten Foundation Request for Funding FAQs
Who is eligible for assistance?
Any family living in the United States of America that has a living child with Batten Disease.
What kind of assistance is available from the Rare Sisters Batten Disease Foundation?
Financial assistance can be given for any needs the family encounters due to Batten Disease; no request is too big or too small. For example, financial assistance can be used for home modifications, vehicle purchases or modifications, travel expenses for medical needs, counseling expenses, equipment, therapy, and any other needs the family may have that is not already covered by insurance.
The Rare Sisters Batten Disease Foundation (RSBF) awards grants contingent on the availability of funds. A family can only receive assistance from Foundation once.
What does not qualify for funding?
Just as if you were working with an insurance company, purchases and/or services must be pre-approved by the RSBF in order to be eligible for payment. The RSBF cannot pay or reimburse vendors for services ordered or provided prior to notification of an award from the Foundation.
How does the application process work and how long does it take to receive a funding decision?
Families who wish to receive assistance must complete an application and submit required supporting documentation. Funds are awarded on a case-by-case basis. We strive to award full amounts requested; if unable, we will do our best to award as much of a request as possible in a fundraising cycle. Families may be asked to be featured in RSBF fundraising efforts to help the RSBF community understand the need for which they are requesting funds.
The foundation reserves the right to decline any application and/or ask for any additional information regarding the application. We accept applications at any time and the RSBF Board of Directors votes on applications approximately once per quarter. If a completed application (including ALL required support) a week or more prior to a voting meeting, it will be reviewed at that month’s meeting. If received within a week of a voting meeting, it be will reviewed at the following quarter’s meeting.
Funds will be paid directly to the vendor providing the service or product. No funds will be paid directly to a family.