Foundation launches family support webinar series, “Sanfilippo Speak”

June 11, 2024

Life with Sanfilippo Syndrome can be extremely isolating for parents and siblings. Few understand the day-to-day challenges of caring for a person with Sanfilippo Syndrome, fighting for their educational needs, and providing a safe and supportive environment. The most important things the Foundation can do is create opportunities that support the families in giving their children a better quality of life and also help these families feel less alone in navigating the myriad decisions they face daily.

To help provide that ongoing support, Cure Sanfilippo Foundation is launching “Sanfilippo Speak,” a new parent support webinar series, covering topics pivotal to navigating life with Sanfilippo. Sanfilippo Speak will provide expert, Sanfilippo-specific discussions on topics such as assistive technology, durable medical equipment, ABA therapy, IEP and transition support, fundraising, advocacy, and more.

First Sanfilippo Speak on June 18:

What is “Assistive Technology”?

The role and use of assistive technology (AT) can make vast improvements in daily life, which is why AT has been chosen as the topics for the first webinar in our series. Rachell Johnson, M.C.D, CCC-SLP, Program Director of the South Carolina Assistive Technology Program, will explore the ins and outs of assistive technology, as well as provide live demonstrations of some AT devices.

Simply follow the Zoom link below on June 18 to join live.
Zoom link:

All Sanfilippo Speak webinars are free and open to the public. Families, therapists, teachers, etc. are welcome.

Additionally, all Sanfilippo Speak webinars are opportunities for participants to ask their questions – beforehand and live, as well as share their experiences on the subject. Questions and experiences can be shared by emailing

No registration is required to attend Sanfilippo Speak. Simply follow the individual Zoom link for each webinar to join live.

Recordings of the webinars will be available after each event on the Foundation’s website.

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