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. One of 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 navigate the myriad decisions they face daily.
Sanfilippo Speak is a family support webinar series hosted by Cure Sanfilippo Foundation to provide families, caregivers, therapists, educators, clinicians, and more with helpful insights into and discussions around pivotal topics specific to navigating life with Sanfilippo Syndrome. Planned topics include as assistive technology, durable medical equipment, ABA therapy, IEP and transition support, fundraising, advocacy, and more.
All Sanfilippo Speak webinars are free and open to the public. Families, therapists, teachers, etc. are welcome.
Oral Motor Function Therapy for Sanfilippo Syndrome
January 19, 2026
How can you proactively strengthen your child’s ability to eat and drink by mouth? What are the differences in traditional modalities of speech and communication therapy versus oral function, myofunctional, and feeding therapies? How can these modalities work for children with Sanfilippo Syndrome?
This Sanfilippo Speak features Megan Seiberg, owner of Inspire Speech in South Carolina, whose knowledge in the field is paired with hands-on experience with a child with Sanfilippo to give her a unique perspective on this topic.
Implementing AAC with Speech & ABA Therapy for Sanfilippo Syndrome
November 12, 2025
What is Alternative and Augmentative Communication (AAC)? What is “total communication”? How can AAC benefit both verbal and nonverbal communicators? How does the progression of Sanfilippo impact a person’s expressive communication skills and what can be done to help them?
The November Sanfilippo Speak webinar features a wonderful therapy team working to implement and support AAC through a co-treatment modality. Hear from our ABA and Speech therapy team on how they make this work for a client with Sanfilippo syndrome.
Estate Planning & Sanfilippo Syndrome
October 30, 2025
When is it a good time to think about estate planning? How do words like ‘probate’, ‘special needs trusts’, ‘executor’, and ‘beneficiary’ relate to me? How do I include my child or children with Sanfilippo in this process?
The October Sanfilippo Speak will explore an overview of the estate planning process to include special needs trusts. Hear from an experienced estate planning attorney about what you need to know to navigate the estate planning process for your family and your child with Sanfilippo syndrome.
Hippotherapy & Sanfilippo: What To Know
April 8, 2025
How can horseback riding integrate PT, OT, and speech therapy? What are its benefits for a child with Sanfilippo Syndrome? What should you look for in a hippotherapy provider? What is the difference between equine therapy, hippotherapy, and therapeutic riding?
This session of Sanfilippo Speak features two seasoned hippotherapy providers exploring hippotherapy as a modality for individuals with Sanfilippo and discussing the differences between hippotherapy and therapeutic riding and their benefits.
Watch the webinar specifically for families
Watch the webinar specifically for providers
Challenges and creative solutions surrounding insurance coverage of Applied Behavioral Analysis (ABA) therapy
January 28, 2025
The January 2025 Sanfilippo Speak shares tips and tricks for long-term planning, goal setting, and insurance challenges in ABA therapy for children with Sanfilippo.
Applied Behavior Analysis (ABA) and Sanfilippo Syndrome
Aug. 14, 2024
The August Sanfilippo Speak explored the ins and outs of Applied Behavioral Analysis (ABA) and Sanfilippo Syndrome. A BCBA-certified therapist and Sanfilippo mom whose daughter receives ABA therapy discuss the differences in ABA therapy for children with Sanfilippo, what to look for in a provider, who makes up an ABA therapy team, and examples of what an ABA therapy session looks like for a child with Sanfilippo.
Durable Medical Equipment (DME)
and You
July 30, 2024
The July Sanfilippo Speak will focus on the ins and outs of durable medical equipment (DME). Explore what qualifies as DME and how to access it. See live device demonstrations and more! Experts from Pediatric Mobility Innovations (PMI), a South Carolina-based DME supplier and long-time supporter of the Foundation, will guide you through all of this, plus answer your questions.
What is Assistive Technology?
June 18, 2024
Rachell Johnson of the South Carolina Assistive Technology Program speaks on the highs and lows of assistive technology (AT), as well as answer questions submitted by you. Explore what all “assistive technology” includes and how it can help children with Sanfilippo Syndrome communicate now and in the future.