We have a limited number of Conference Grants for families affected by Batten disease based in the United States or Canada.

Priority is given to families who have not received funding for the conference in the past, new families, and those who have been unable to attend for several years due to financial stress. 

We are still accepting volunteer help for this July’s BDSRA Annual Family Conference in Chicago! There are numerous committees you can join. No prior experience is needed! Learn more and sign up for the volunteer email list.

If you missed it in last month’s newsletter, you can read about Batten disease research and clinical updates from our Head of Research & Medical Affairs, Dr. Ineka Whiteman, in her latest quarterly research column. 

Thank you to everyone who donated and/or participated! Your support of the Batten disease community and BDSRA doesn’t go unnoticed. Your support drives the organization and the mission. Thank you for your advocacy. Thank you for being a Batten Advocate for a Cure. 

Fam Funds: The BDSRA Foundation Fam Funds Program empowers our Batten families to share their Batten journeys, connect with fellow families, and raise funds for BDSRA. Those who sign up for the program can pick their own Fam Fund name to represent their child or family and get a personalized web page with a unique URL hosted by BDSRA for them to share their story with those in their community, and allow them to make a life-changing donation in honor of their affected child(ren). Families can direct their Fam Fund Donations to the mission areas that mean the most to them within the BDSRA Foundation: Greatest Need, Support, Research, or Advocacy.

$5 Fridays: From copy paper to personnel, $5 Fridays is designed to keep the office moving. The more $5 Friday donations BDSRA Foundation receives for operations, the more money BDSRA can invest in programs, research, and advocacy.

Want to plan a birthday fundraiser for BDSRA? We are here to help!

BDSRA can create a custom link and QR code for you to use for a birthday fundraiser that directs donations to us! Creating a Fam Fund is another great way to raise funds to celebrate your birthday, and we can do all the legwork for you. 

If you are interested in setting up a Fam Fund for a birthday fundraiser or a stand-alone birthday fundraiser this year, please email Heather Dainiak at heather@BDSRAfoundation.org to get started.

Click below to read the letter BDSRA signed on to during March:

• A letter to Ohio State Senator Steve Wilson, urging him to support S.B. 207 (a bill to prohibit certain health insurance cost-sharing practices).

The BDSRA Foundation Family Register is a vital tool that enables us to keep you informed of ongoing Batten disease research, including future clinical research and natural history opportunities.

The information collected in this form is kept STRICTLY CONFIDENTIAL. Your involvement in this survey is entirely voluntary, and you may request to be removed from the list at any time. The form takes just a few minutes to complete and can be accessed by clicking the button below.

Together, we remember those we have lost to Batten disease. We work daily to build a brighter future for families in their honor and memory.

In this newsletter’s edition, we honor and remember:

Violet Caroline Sherman

To have your loved one’s name placed in The Illuminator and read at the Celebration of Life at the Annual Family Conference, please email patrick@bdsrafoundation.org.

Thank you for investing in our mission. We exist to provide support, research, and advocacy for families with all forms of Batten disease. We want to acknowledge the donors who gave so generously last month to our work.

Together, we are Batten Advocates for a Cure.

To view the list of recent donors, please click the button below!

We connect your donation to Support, Research, and Advocacy for families of all CLN types.