Edwina Fennell's Fundraising Page
June 9, 2024
Together, We Are Batten Advocates for a Cure.
Contact your legislators by sending them a pre-written letter through our advocacy module. The pre-written letter urges your congressional representatives to drive legislative efforts prioritizing Newborn Screening for CLN2 Batten disease and to petition the FDA to adopt a more agile approval process for rare and ultra-rare disease treatments.
Welcome to your personal fundraiser page!Participants may customize their personal fundraising page with photos, a summary of their Batten journey, and fundraising goals.Have a team fundraising page? Give it a shoutout, and advocate by visiting the main International Batten Disease Awareness Day page and browsing the activities.For questions or assistance, please email support@bdsrafoundation.org.
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