Finding Your Way Through Sanfilippo
Receiving a diagnosis of Sanfilippo Syndrome for your child can feel isolating, frightening, and absolutely overwhelming. It is a journey only a few understand. It’s natural to feel lost amidst the medical complexities and emotional weight.
At Team Sanfilippo Foundation, we want you to know one crucial thing: Your family is not alone in this fight.
Driven by a common purpose: to find a cure and better treatments for Sanfilippo Syndrome. Team Sanfilippo Foundation was built by parents, for parents—and we understand the unique challenges and triumphs you face every single day.
Beyond the Diagnosis: Hope and Action
While the diagnosis is heartbreaking, it also brings an urgency to act. Team Sanfilippo Foundation is dedicated to accelerating research, advocating for better care, and spreading awareness about Sanfilippo Syndrome. We are actively working to fund groundbreaking studies and support initiatives that offer hope for a brighter future for our children. Your family’s voice, experience, and journey contribute to this powerful movement.
A Community That Understands
One of the most powerful tools in navigating Sanfilippo Syndrome is connection. Connecting with other parents who truly understand what you’re going through can provide invaluable emotional support, practical advice, and a sense of belonging. Our community is a safe space where you can share your experiences, celebrate milestones, and find comfort in knowing others are walking a similar path.
Join Our Growing Family on Facebook!
We believe in the power of connection and collective action. We invite you to connect with us and our incredible community on Facebook where you can:
Discover a supportive network
Find other parents who understand your journey, share insights, and offer encouragement.
Stay informed
Get the latest updates on Sanfilippo research, clinical trials, and advocacy efforts.
Access valuable resources
Learn about care strategies, emotional support programs, and opportunities to get involved.
Share your story
If you’re comfortable, your unique experience can offer hope and understanding to others.
This is the parents of Sanfilippo children group on FB. This is a parent only group. If you do not have a child currently diagnosed, they will not approve.
This is the Team Sanfilippo Foundation support group that welcomes all family, friends, and support workers.
This is a group run by Sanfilippo parents for people who think their child may have Sanfilippo Syndrome. It’s a place where they can ask questions and get advice from people who live this life.
