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It’s incredibly rare to hear directly from someone living with Sanfilippo. Most children lose their speech as the disease progresses in early childhood. But this remarkable 18-year-old with Sanfilippo type B is still able to speak for herself, a gift that only a small number of families ever get to experience. Bridget’s journey is very different from Sadie’s and from most children with Sanfilippo, who decline much more quickly, but it’s no less tragic. In the prime of her life, Sanfilippo is sta
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Today is World Sanfilippo Awareness Day. Will you share their story today and help us get closer to a cure? #WorldSanfilippoAwarenessDay #sanfilipposyndrome Jolene Brings JOY: Her Journey with Sanfilippo Loralei’s Lovely Sanfilippo Life | Saving Sadie Rae: Cure Sanfilippo
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Tomorrow is World Sanfilippo Awareness Day — a day that holds deep meaning for our community. We carry Kirby in our hearts, knowing that while we can’t change her story, there is still time to change the story for so many other children living with Sanfilippo syndrome today. Your voice, your actions, and your compassion make a real difference. Here are three powerful ways you can help: 💜 Share Awareness Help Sanfilippo families feel seen. Share posts like this one or any Sanfilippo content you
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