Batten Disease Families Need Your Support

Here’s How You Can Help:

Prepare for Giving Tuesday with our Guide!

What’s a BDSRA project, initiative, or cause you’re passionate about?

The Haley’s Heroes Foundation will raise funds on December 3 to sponsor childcare at the 2025 BDSRA Annual Family Conference in Lincoln, Nebraska to help ensure it’ll come at no cost for Batten families. Whatever you’re passionate about, help raise funds for it on December 3rd’s Giving Tuesday and through the end of 2024.

Here’s how YOU can help raise funds for a BDSRA project, initiative, or cause that resonates with you (click the button below for full details):

1. Share a letter with your community

2. Post on social media

View Our Giving Tuesday Guide

Other Ways to Give

Giving stock to the Foundation can potentially help you reduce future capital gains. While giving this way sounds complicated, our financial partners are here to help. Please consult your tax advisor. To learn more, please contact BDSRA President & CEO Amy Fenton Parker at amy@bdsrafoundation.org.

Have you considered supporting the BDSRA Foundation with your Donor Advised Fund? BDSRA is a 501(c)3 and needs your grant distribution suggestions. Join other Batten advocates who direct those checks our way! Access this prewritten form to give to your money manager and ask that they let us know who suggested it.

Many Batten advocates give to BDSRA through their Employee Match Program. Numerous companies support our mission alongside their employees. If your company gives a match, ask them how BDSRA Foundation can be selected by you and the coworkers who support your Batten journey. Call or email us if your employer needs more information to get started.

Did you know you can give to the BDSRA Foundation with a qualified charitable distribution (QCD)? Also known as an IRA distribution, a QCD allows you to give up to $100,000 per year to nonprofit organizations such as BDSRA. When you donate this way, the donation also can count toward your required minimum distribution. Please consult your tax advisor. To learn more, please contact Amy at amy@bdsrafoundation.org.

There are three ways to give to the BDSRA Foundation using your Life Insurance policy: name the Foundation as a beneficiary when you buy the policy, edit an existing policy to include us as the beneficiary, or transfer ownership of the policy to the Foundation. To learn more, please contact Amy at amy@bdsrafoundation.org.

Our Annual Appeal letter will be hitting your mailboxes soon if it hasn’t already. The letter highlights our recent milestones and the different ways you can support our mission.