Newly Diagnosed

For families newly diagnosed with Batten disease or new to BDSRA, we have created a new family packet specifically to answer initial questions and introduce you to what we can offer. We understand that getting this diagnosis is extremely overwhelming and we want to be of service to your family.

You are not alone in this; the entire Batten community is here to support you and battle this disease together. Simply fill out this short form and we will contact you to mail you a packet tailored to your family.

Examples of items in the New Family Packet:

  • Disease-specific information
  • BDSRA services overview
  • Introduction to the Annual Family Conference
  • Siblings Involved Batten Support (SIBS) Program

Our services are available nationwide and at all levels of participation.

We meet families where they are and it is completely up to them to choose how they would like to be involved. Some individuals participate in many support services, connect to our community of other families or fundraise to contribute to our shared mission. There is an online newsletter, The Illuminator, for those who wish to stay in the loop on what the organization is doing with families and the broader Batten disease community worldwide.

We connect families with clinicians, educational consultations and other Batten families. We provide support to bereaved parents, and maintain a closed Facebook page for Batten caregivers where many find direct support from others experiencing the same thing. BDSRA also utilizes Facebook for monthly “Ask-an-Expert” chats, where we bring clinicians and other subject matter experts to you, providing a direct line of communication on topics that you request. We provide many other support services including an equipment exchange program and phone consultations to find community resources.

I like that BDSRA does not give up the quest to find a treatment or cure, and that they are there to support us. I like that they are truly growing the organization and helping to create awareness in many areas previously untouched. – Batten Mom

Margie was there at the first phone call and BDSRA is still helping us two years later, navigate the ebbs and flows of being in a clinical trial. It has been so worth it. -Batten Mom

If you would like to speak to someone directly, Tracy Kirby, BDSRA’s Family Liaison is available by phone (614-973-6013) or email (tkirby@bdsra.org).


Request a New Family Packet

What Next?

Newly Diagnosed

If you are a newly diagnosed family, we welcome you to connect with BDSRA further and request a new family packet with additional information and resources available.

Family Support Services

We offer direct support services, guidance navigating difficult systems and can help you connect to other families and experts in the field.

Annual Family Conference

Hundreds of family members, children and researchers gather each year to learn about patient care, education, and the latest in science.

Help Our Mission

Whether its advocacy or financial support, there are many ways to join us and strengthen our community working together toward a common goal.

Keep In Touch
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