We live in an exciting and sometimes unpredictable world, but there is often a silver lining; we’ve taken the time to consider what’s truly important to us. At BDSRA, helping others is what’s important. #GivingTuesdayNow was created by the #GivingTuesday movement in response to the current pandemic as a way to help our various philanthropies maintain the financial vitality needed to tackle the world’s problems. #GivingTuesdayNow is Tuesday, May 5, 2020, and we invite you to visit our website and make a donation at bdsra.org/donate/ or through our Facebook page. Your gifts have always been what’s kept BDSRA going strong to serve the Batten community, so let’s ensure a hopeful future for all those affected by a Batten diagnosis! You can learn more about #GivingTuesdayNow here.
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BDSRA will continue accepting BDSRA Store orders but due to social distancing fulfillment of these orders will be delayed. Thank you for your understanding.
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The latest issue of the Illuminator is here. Click here to read about Rare Disease Week, Global Genes, Trnds Symposium and more.
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Click here to read the latest issue of the newsletter, including science updates from the family conference.
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Click here to read the latest issue of the newsletter
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The Batten disease community is one of support and strength, and we know that remembering loved ones is so important to you and your family. If you would like to have a name added to the Batten Disease Memorial, or update any information please click here to complete the form. All information must be submitted no later than July 8th, 2019.
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The newsletter is here! Click here to read the latest issue.
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Dear BDSRA Community, As you may know, BDSRA is creating a new Memorial to replace the beloved one that was built in 2004. The original Memorial was created by a group of families who had lost someone to Batten Disease and provided a place for families to visit during the Annual Conference, a legacy of those we have loved and lost. Now, at over 500 names, it has outgrown our ability to keep up, and we are launching a new Memorial to take its place. While the old Memorial is deeply cherished, the new one will provide a living legacy – and the ability to grow as needed. The committee charged with creating this new Memorial is made up of families who were involved in the creation of the original one. Key features of the new Memorial include: Interactive touchscreen interface – the ability to search for a specific name A profile for each name that includes a story, family information, and photo Features the custom stained glass from the original Memorial Future phases include the ability to add/view information through the internet/social media We are working diligently to have this ready for the July Annual Conference in Denver – but we need your help.
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