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 with a living child with Batten Disease is eligible. At this time, we are only able to grant
funds to families living in the United States of America.
What kind of assistance is available from the Rare Sisters Batten Disease Foundation?
Financial assistance can be given for specific needs the family has to accommodate the drastic upset
Batten Disease causes. RSBF aims to significantly help families fund major projects and needs.
Financial assistance can be used for (but not limited to) home modifications, vehicle
purchases/modifications, travel expenses for medical needs, counseling expenses, equipment, therapy,
and any other needs the family may have that are not already covered by insurance. No request is too big
or too small.
A family can only receive assistance from Rare Sisters Batten Disease Foundation once per year, and
priority will be given to families that have not yet received funding. Additionally, Foundation awards
grants are contingent on the availability of funds.
What is required to receive funding?
Just as if you were working with an insurance company, purchases or services must be pre-approved by
the Rare Sisters Batten Disease Foundation in order to be eligible for payment. The Rare Sisters Batten
Disease Foundation cannot pay or reimburse vendors for services that were ordered or provided prior to
notification of an award from Rare Sisters Batten Disease Foundation.
What is the process to apply for and receive a grant?
Families who wish to receive assistance must complete an application and submit required supporting
documents. Funds are awarded on a case by case basis. The Foundation reserves the right to decline
any application and/or ask for any additional information regarding the application.
While we strive to award full amounts requested, when this is not possible, we will do our best to award
as much of a request as we can in a fundraising cycle. Families may be asked to be featured in RSBF
fundraising efforts to help the RSBF community understand the need.
Applications may be submitted at any time. The RSBF board of directors votes on applications
approximately once per quarter. If your completed application (including ALL required supporting
documentation) is received up to a week before a voting meeting, it will be reviewed at that month’s
meeting. If received within a week of a voting meeting, it may be reviewed at the following quarter’s
Funds will be paid directly to vendor(s) providing the service or product. No funds will be paid directly to a
family. Funds must be distributed within 6 months of the grant being approved or they may be redistributed to other families in need.