What is life like with Sanfilippo Syndrome? Lyra's mom shares their perspective. #CureSanfilippo #dayinthelife | Cure Sanfilippo Foundation
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What is life like with Sanfilippo Syndrome? Lyra's mom shares their perspective. #CureSanfilippo #dayinthelife | Cure Sanfilippo Foundation
1.9K viewsAug 3, 2024
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Thinking of this special soul today. You are missed deeply, Abigail. - with Fight For Abigail | Cure Sanfilippo Foundation
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Thinking of this special soul today. You are missed deeply, Abigail. - with Fight For Abigail | Cure Sanfilippo Foundation
27.4K views10 months ago
FacebookCure Sanfilippo Foundation
We carry your memory with love, Charlotte, and think of you today, especially. - with Julie Quesnel | Cure Sanfilippo Foundation
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We carry your memory with love, Charlotte, and think of you today, especially. - with Julie Quesnel | Cure Sanfilippo Foundation
14.5K views8 months ago
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Remembering the bright light of Lucas' precious life and thinking of everyone who loves him. | Cure Sanfilippo Foundation
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Remembering the bright light of Lucas' precious life and thinking of everyone who loves him. | Cure Sanfilippo Foundation
8.3K views9 months ago
FacebookCure Sanfilippo Foundation
Remembering precious Blair today and her profound impact on the world. - with The Blair Banner | Cure Sanfilippo Foundation
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Remembering precious Blair today and her profound impact on the world. - with The Blair Banner | Cure Sanfilippo Foundation
11.4K views10 months ago
FacebookCure Sanfilippo Foundation
Remembering sweet Jackson today and thinking of all who love him. - with Hope and Action for Jackson- Cure Sanfilippo | Cure Sanfilippo Foundation
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Remembering sweet Jackson today and thinking of all who love him. - with Hope and Action for Jackson- Cure Sanfilippo | Cure Sanfilippo Foundation
13.4K views9 months ago
FacebookCure Sanfilippo Foundation
They’re losing their voices. The ability to walk. The ability to eat by mouth. And while Sanfilippo syndrome marches on, the FDA has delayed a promising treatment despite acknowledging the science is strong. More than 21,000 people have signed our letter urging the FDA to act with urgency. But we only have until August 6 to show them how many people care. Please sign the letter and share this post to tell the FDA our kids can’t wait. (see link in comments) #ApproveHopeNow #NoMoreDelays | Cure Sa
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They’re losing their voices. The ability to walk. The ability to eat by mouth. And while Sanfilippo syndrome marches on, the FDA has delayed a promising treatment despite acknowledging the science is strong. More than 21,000 people have signed our letter urging the FDA to act with urgency. But we only have until August 6 to show them how many people care. Please sign the letter and share this post to tell the FDA our kids can’t wait. (see link in comments) #ApproveHopeNow #NoMoreDelays | Cure Sa
12.3K viewsAug 5, 2025
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This is how we do it … Creating Alex’s nighttime routine (Life with Sanfilippo Syndrome)
3.9K viewsFeb 28, 2025
YouTubeCure Sanfilippo Foundation
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Happy birthday to Luke! Sending you all our love. - with Hope Joy Love Life Luke's Sanfilippo Story | Cure Sanfilippo Foundation
9.1K views10 months ago
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Today is Garrett's birthday. We remember his courage, his smile, and his love. - with Guardians for Garrett | Cure Sanfilippo Foundation
31.2K viewsOct 13, 2025
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"A day where we can be fully ourselves, authentically and unapologetically" // Los Angeles family gathering hosted by the Foundation in September. | Cure Sanfilippo Foundation
845 viewsOct 2, 2025
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Happy birthday to Dimitri! Enjoy all your favorite things today! | Cure Sanfilippo Foundation
1.3K views10 months ago
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Living with Sanfilippo Syndrome: A Mother's Heartfelt Journey
6.9M viewsDec 8, 2023
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Navigating Sanfilippo Syndrome: A Parent's Journey
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Understanding Sanfilippo Syndrome: Key Facial Features
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Logan's Success Story: Overcoming Sanfilippo Syndrome
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Liv's Journey with Sanfilippo Syndrome Awareness
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Support the Cure Sanfilippo Foundation Today
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Understanding Sanfilippo Syndrome: Liv's Journey
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