BDSRA is dedicated to helping families through every stage of this disease. Founded by parents seeking to build a network around Batten disease, BDSRA is the largest support and research organization dedicated to all forms of Batten disease in North America. BDSRA offers several programs and services to support and inform families affected by Batten disease.
All of the services of BDSRA are available across the nation and are available at all levels of participation. Some of the individuals who turn to the association have need of the full range of services – contact, newsletter, referrals, and consultations – and are willing to assist the Association in compiling information and providing professionals with facts and observations. Others want simply to receive the newsletter and remain anonymous to all other aspects of BDSRA. Whatever the needs, BDSRA can meet them.
Our services include:
- Annual Family Conference
- Monthly e-newsletter and email alerts
- Phone consultations to find community resources and provide support
- Closed Facebook group for Parents & Caregivers
- “Ask-an-Expert” Facebook Chats
- Outreach to bereaved parents
- Educational consultations and advocacy
- Referrals for carrier/genetic testing
Please do not hesitate to call us about any of these services, if you have any questions, or if you just need to talk.
We are here for you.
“When our daughter was first diagnosed, our family didn’t know anything about Batten disease – it’s so rare. When we searched online, we found BDSRA. The staff and connections with other Batten families that we’ve come to know through attending the annual conference have been priceless.”
– Batten mom of daughter with Late Infantile Batten disease