Get ready- BDSRA is kicking off our 2021 Annual Appeal Campaign!

Follow our social media for posts about our work and our Batten community.

Support for the BDSRA Community

This week, learn more about support, one of BDSRA’s founding pillars. Follow along our social media accounts to see the highlights, and click here to see the summary of what this week’s featured topic.

 

 

 

  • Continue scrolling to view highlights from this week’s featured topic.

Invest in the BDSRA Mission.

Make a donation to the 2021 Annual Appeal to build the future of BDSRA together through support, research, and advocacy. We appreciate your investment in our mission.

We are excited to build the future of BDSRA with you.

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Support Highlights from the 2021 Annual Appeal:

• The BDSRA Annual Family Conference brings our Batten community together to learn and lean on each other. Our 2022 Annual Family Conference will be held July 8th-10th in Cleveland, Ohio!

• Virtual programs such as Ask-An-Expert, Grief Chats, and parties gather our community from near and far to spread joy and insight. View current events by clicking here.

• BDSRA’s grant programs are varied and aim to bring joy, stability and support regardless of financial situation. Learn more about our grant programs by clicking here.

• Connecting our Batten community with content experts empowers families to make informed choices and expand their support network.

• Sharing joy, hardships and programs specifically for SIBs provides lifelong tools to support and empower their families. Learn more about the SIBs program by clicking here.

• BDSRA maintains active relationships with industry partners to lead with the patient voice in all phases of designing and implementing clinical trials.