International Batten Disease Awareness Day is Sunday, June 9!
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We are nearing the next checkpoint in our $75,000 fundraising goal! We have raised over $54,000 thanks to you and your advocacy!
There are many ways to advocate before International Batten Disease Awareness Day this Sunday, June 9. Check out all the activities by scrolling below. Click the button to view the main fundraising page.
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EXTRA T-SHIRTS ARE STILL AVAILABLE!
T-shirts will arrive after June 9. Click the button below to purchase from our limited supply. The remaining T-shirts are on a first-come-first-serve basis.
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Send Pre-Written Letters To Your Congressional Reps
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Send a pre-written letter to your congressional representatives asking them to drive legislative efforts prioritizing Newborn Screening for CLN2 and urge the FDA to adopt more flexible standards for drug approval for rare and ultra-rare diseases. It’s easy and only takes a couple of minutes!
Click the button below to get started, and watch the tutorial on the module page for a step-by-step guide.
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Tell Us Who/What You’re Advocating For
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Are you advocating for your loved one(s) with Batten disease? Are you advocating for a brighter future for all Batten families? Whoever and whatever you’re advocating for, please share with us using our racing bibs!
Take a photo or video of yourself holding the bib and share it on social media using the hashtag #BattenDay2024, and tag BDSRA to have your post shared! You don’t need to participate in the virtual 5K to do this activity.
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Tell us where the path has taken your family. Copy, paste, and answer the prompts below via your social media to advocate. Answer the prompts by making a new post, tagging us, and using the hashtag #BattenDay2024. Feel free to share a picture!
Name of Family:
Name of affected child/children:
CLN type:
Where has the path with Batten disease taken you?
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Register For The Virtual 5K & Create A Fundraising Page
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This is open to individuals of all ages and abilities. Once you register, either as an individual or as part of a team, the focus then shifts to raising funds. Set a personal/team fundraising goal and encourage your family, friends, colleagues, community, etc. to donate to your fundraiser.
If we achieve our $75,000 fundraising goal, we’ll be able to provide five $1,000 travel stipends for members of our Batten community to attend Rare Disease Week on Capitol Hill! The proceeds you raise towards our goal also:
- Help BDSRA cover shipping costs for the Equipment Exchange Grant, ensuring Batten families can receive the equipment they need from fellow Batten families.
- Help bring the Center of Excellence members together for in-person meetings twice a year. You can find out who the Center of Excellence members are at the Annual Family Conference!
- Help BDSRA produce and manage virtual events during the year. From Ask-An-Expert webinars to family parties, BDSRA hosts numerous events for our Batten community.
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Click the button below to get started!
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Share Our Daily Batten Facts
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A daily fact about Batten disease has been posted to our social media channels (Facebook, Instagram, X, and LinkedIn) since June 1 and will continue through June 9. Please share them to raise awareness!
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