We continue to recognize, stand with, and advocate for the over 300,000,000 people worldwide living with a rare disease, especially our loved ones with Batten disease. We thank everyone for their advocacy during Rare Disease Week. Thank you to everyone who ordered Panda Express on February 27 (funds raised to be announced at a later date), donated, shared our posts, participated in our fundraisers, educated someone, etc. 

We can’t make a difference without your advocacy. Thank you again for spreading the word. The more people we inform, the more people we can have to help advocate and raise funds for family support, treatments, and a cure.

Read our summary below! 

BDSRA Board Secretary, Gretchen Fieschko (standing far right in the first photo above), had the honor of representing the BDSRA Foundation at the inaugural meeting for the Batten Disease Clinical Research Consortium (BDCRC) at the Rare Diseases Clinical Research Network (RDCRN) Semi-Annual meeting in Washington, D.C. Learn more about the BDCRC and RDCRN by clicking below. 

Joining us in Chicago for the Conference July 10-12? We need volunteer help for our various conference committees! No prior experience is needed. Click the button below for more details.

Paper Clouds Apparel will donate 50% of profits from the “Love is Blind” Braille collection to the BDSRA Foundation. This collection features the word “Love” Brailled by Daxx, who has CLN3 Batten disease. Shop now because the deadline is almost here!

Right now, you can support the BDSRA Foundation by purchasing some sweets from See’s Candies! Buy some assorted chocolates before Valentine’s Day, or snag some Easter candy to get a head start on those Easter baskets! Find all that and more and help benefit the Batten disease community by clicking below. 

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.

The following write-up appears in BDSRA Australia’s most recent quarterly newsletter and has been edited for clarity.

David Brannigan turned the big 40 on Friday, February 20th, a huge milestone that no one ever thought possible when he was diagnosed with CLN2, now believed to be an atypical variant. David began showing symptoms in his late teens and was diagnosed in early 2007, when nobody even knew of Batten disease, including the neurologist. The doctors told his mother, Michele, “Go online, find out what you can, and let us know what you learn, as we don’t know anything.” The family didn’t have computers like today, just the type that took forever to start up. Their first contact was with an American mother with CLN2 children, Edie Dockter, who registered David’s name on a Batten disease registry, and later connected with Vanessa Anderson OAM and BDSRA Australia.

David has attended almost every BDSRA Australia Family Conference, and his mother, Michele, is part of the international community online. There are many memories over the years of the fun that’s been had when everyone’s together. 

David still has full eyesight and has never had a seizure. However, his speech has become harder to interpret. He still loves to get out and about with his support workers and especially likes to go fishing. David loves food, gardening, and bright, Hawaiian-type shirts. He loves music and dancing – as those who have attended BDSRA Australia Family Conferences know!

As a community, we send our biggest wishes to David for this very special birthday.

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.

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.