Partner-Family Resources

You aren’t alone. We’re here to help.

We provide multiple forms of support to our partner families, as well as connect them to other groups and resources.

News & Information

Find the latest news from the Foundation regarding fundraising progress, research on Sanfilippo Syndrome and recent findings, sources of inspiration, and openness about being a Sanfilippo family. Plus other sources of Sanfilippo-related news.

Spreading Awareness

Your family’s story deserves to be heard. People want to help. The Foundation supplies your family with informational and custom materials, strategies, and continuous support for sharing your story.

Keeping Up With Research

You don’t have time to monitor all the scientific ideas and projects happening and emerging. We do that for you, and keep you updated about all of it.

Caring For Your Child

Perspective on the many aspects of caring for your child with Sanfilippo Syndrome for you to consider, as well as connecting you to valuable resources.

Fundraising For A Cure

Research for a cure to Sanfilippo Syndrome largely happens because it is sparked by the determined families of diagnosed children. It’s hard knowing that research doesn’t happen unless you are leading the fundraising charge for it.

With the Foundation, you aren’t fundraising alone. We provide brainstorming, planning, and logistical support, marketing assistance, and much more to our partner families. Events big and small, in person and virtual. Tap our wealth of experience and resources to maximize your family’s fundraising efforts.

Emotional Support

The weight you carry on your shoulders is hard for others to understand. Here, you are among people who understand because they have been and are presently in your shoes. Let us help support you and your family.

Online Store

Many families like to create fundraising swag for their family, friends, and supporters to wear and spread awareness.

You can work with the Foundation to create your swag and have it available as a “family boutique” through the Foundation’s online store. Which frees your family from dealing with money, inventory, or shipping. It also enables supporters from around the country to purchase your gear.

Let’s get started on your family’s boutique. Whether starting from scratch or already-established designs and items. We’re eager to hear from you.

Sanfilippo Conference

ADVANCE, a Sanfilippo Community Conference, is an annual virtual that brings together families and caregivers, scientists and researchers, clinicians and therapists, advocates, biotechs, and supporters from around the world. All to engage and advance the work to help children with Sanfilippo Syndrome.

Local In-Person Family Gatherings

Life with Sanfilippo Syndrome is unique. Very few people truly understand what you are going through. So when families of children with Sanfilippo get together, there’s an overwhelming feeling of understanding, togetherness, and love. Because these moments are so valuable, the Foundation is coordinating and hosting local family gatherings around the country.

Want to be a partner family?

If your family would like the support available from the Foundation, we’d love to hear from you. It would be an honor to have your family as a partner.