January 2023 Volume 34, Issue 1
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BDSRA unveils 2022 Annual Appeal total
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We are proud to unveil the grand total for the 2022 Annual Appeal, $117,982.44!
We are humbled by the generosity of our donors and community. These donations will help BDSRA continue to make a difference for Batten families with family grants, research funding, sharing family stories, a Science Officer, and much more!
From the bottom of our heart, we thank you for investing in our mission and joining us in envisioning a World Without Batten.
Together, we are Batten Advocates For A Cure.
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SAVE THE DATE | 2023 BDSRA Hybrid Family Conference
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The 2023 BDSRA Annual Hybrid Family Conference will take place from July 14-16 at the Embassy Suites by Hilton Denton Convention Center in Denton, Texas! Book a room by clicking the button below!
Follow our website and social media channels for both in-person and remote registration information this spring.
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BDSRA looks back on 2022, sets goals for 2023
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From International Batten Disease Awareness Day to the Annual Family Conference, 2022 was a memorable year for the BDSRA staff.
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As we look ahead to 2023, we’re aiming to share more stories from the Batten community, improve our fundraising efforts, and continue to spread the word about our programs.
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Moving preparations are underway for BDSRA!
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New year, new home!
We are currently moving to a new location in Gahanna, OH, just outside Columbus. Preparations are underway at our current location. New address details will be available in the future. A big thank you to Emily Grise, who spent a few weeks helping us pack and organize our things for this move. We’re grateful for Emily’s hard work and dedication!
We are thrilled to make new memories at this location and continue to serve the Batten community while saving the organization 60% on rent costs!
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Fred Surrey | The Importance of Batten Disease Advocacy & Education
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What does Advocacy mean to you? BDSRA Board Treasurer and bereaved Batten parent to Lauren and Michele, Fred Surrey, answers that and explains the importance of educating and fundraising in the video above.
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Interested in Sharing Your Story?
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The BDSRA Foundation is committed to supporting and advocating for those affected by Batten disease to raise awareness and give this community a platform to share their stories.
Sharing your story allows BDSRA to help raise awareness for Batten disease and advocate for improvements and developments for our three pillars — Support, Research, and Advocacy.
Please contact BDSRA Foundation Marketing & PR Coordinator Patrick Kotnik at patrick@bdsrafoundation.org if you’re interested in sharing your story with BDSRA.
Shared your story with local media? Let us know! Email Patrick and we will share!
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Do You Follow BDSRA on Social Media?
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Want to see more BDSRA content? Don’t miss out on upcoming events, information, campaigns, and community posts! Follow @BDSRA on Facebook, Instagram, LinkedIn, and Twitter to stay in the know on all things happening in our Batten Community!
Click below to follow all of our accounts:
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BDSRA Virtual Family Valentine’s Day Party
Wednesday, February 15th | 6-7 p.m. EST
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Love is in the air! Join us for the BDSRA Virtual Family Valentine’s Day Party on Wednesday, February 15th at 6 p.m. EST.
Registrants can reserve a free Valentine’s Day Party Kit (includes a story and craft for the party). PARTY KITS ARE NEARLY SOLD OUT! Shipping is available for U.S. families only.
Registrants who choose not to reserve a Valentine’s Day Party Kit may purchase the book that’ll be read during the party on the registration form.
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Upcoming Virtual Workshops Hosted by Courageous Parents Network
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Courageous Parents Network will be hosting three virtual workshops over the next three months. Each workshop is free to attend and will take place on Zoom.
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Rare Disease Week on Capitol Hill
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Registration for Rare Disease Week 2023 closes on Friday, February 17th.
This link to our #ToolboxTuesday video on the left breaks down the event for those wishing to participate.
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Wisconsin RUSP Alignment Legislation
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The EveryLife Foundation for Rare Diseases is leading efforts to pass RUSP alignment legislation in Wisconsin. Anyone interested in supporting RUSP alignment legislation advocacy efforts is asked to take a survey.
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Research Updates from Industry Partners
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No update available at this time.
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No update available at this time.
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No update available at this time.
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No update available at this time.
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No update available at this time.
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January 2023 Facebook Fundraiser Spotlight:
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Thank you for sharing and supporting our mission on social media! You can visit each fundraiser by clicking on the names above. Thank you!
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In Loving Memory
Remember those we have lost to Batten disease. It’s in their honor and memory that we work daily to build a brighter future for families.
Jeremy Connor Hawkins | April 25, 2001 – December 2, 2022
Eric Connor Lowden | December 7, 1995 – December 8, 2022
Bailey Rae Morse | December 4, 2009 – December 22, 2022
Bryan Aaron Scott | August 2, 1989 – December 29, 2022
Jaxson James Scott O’Brien | December 8, 2012 – January 26, 2023
To have your loved one’s name placed in The Illuminator please email info@bdsrafoundation.org.
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Thank You BDSRA Community of Donors!
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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.
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To view the list of recent donors, please click the button below!
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Your gift makes all the difference in the lives of families.
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Batten Disease Support and Research Association
(614) 973-6013 | info@bdsra.org | www.bdsra.org
View Message Online Link
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