Website Translation

Recent Bulletins

Help Raise Funds

Donate to Batten Disease and help fund the necessary research developments to find solutions to Batten Disease.

Donate To BDSRA Online

Use of Children's Photos on Website

1. The photos of children on the BDSRA website have been made possible by the generosity of and at the request of the parents of the children. No photo of a child under the age of 18 will be placed on the BDSRA website without the consent of a parent of such child.


2. If a parent would like for BDSRA to include a photo of his or her child with Batten Disease in the feature "Faces of Batten" on the BDSRA website, the parent must either (a) send an email to the Executive Director of the organization with a request and a digital photo of the child; or (b) send a written request to the Executive Director by regular mail which includes the child's photo. If requested, BDSRA will make every attempt to include the child's picture on the organization's website; however, BDSRA cannot guarantee that the child's picture will be used, nor how long the child's picture will remain on the website. BDSRA will attempt to return any photos sent through the mail. If, at any time after requesting that a child's photo be placed on the website, a parent decides that he or she no longer wishes to have his or her child's photo available on the website, the parent must so notify the Executive Director in writing. The organization will remove the photo within a reasonable time after receipt of such request.


3. Any photo sent to BDSRA must be one that is not protected by copyright laws. Generally, this means that the photo was not taken by a professional photographer. If a photo was taken professionally and/or belongs to someone else, then before the photo may be used on the website, the person providing the photo must obtain a waiver of the copyright from the person owning the rights to the photo. If this is not obtained, then BDSRA and the parent submitting the photo could be in violation of federal copyright laws. By submitting a photo to the organization for placement on the website, a parent is (a) granting BDSRA a license to display the photo on its website, (b) representing that they have the necessary rights in the photo to grant such a license, and (c) agreeing to indemnify BDSRA against any third party claims relating to the organization's use of the submitted photo on its website.


4. Once the organization places a child's photo on the BDSRA website, the photo becomes part of the Internet. The organization will have no control over the photo, except to remove it from the organization's website. The child's photo could be copied from the website and used for some other authorized purpose. BDSRA does not assume any responsibility, either direct or indirect, for unauthorized reproduction of these photos or for any damages resulting from any such unauthorized reproduction.