Welcome to the Sanfilippo Children’s Foundation’s Family Corner, a resource-rich section of the website specifically for families with children battling Sanfilippo Syndrome.
This section has information to help navigate caring for a child with complex medical needs, learn who's who in the Sanfilippo space and fully understand the current research landscape.
Subscribe to our e-newsletter & Family updates
Stay informed by subscribing to our quarterly e-newsletter.
We also have a family updates list so the Foundation can communicate privately with the families of children with Sanfilippo Syndrome. Don't receive our family updates? Subscribe here
Join Patient Registry
The Sanfilippo Children's Foundation urges all families with children living with Sanfilippo Syndrome (also known as MPS III) to register their details with the Connect MPS Patient Registry. This data in the registry will help the MPS community, medical community, researchers and pharmaceutical companies to better understand the natural history and progression of this devastating condition. This valuable information may be used to inform the development of therapies to treat Sanfilippo Syndrome.
Register your child here
Understanding Genetic Risk
It is particularly important for families with children with Sanfilippo to understand their genetic history and to communicate genetic risk to relatives.
The Foundation has created this downloadble PDF factsheet for you to share with relatives so they understand their genetic risk and can seek genetic counselling and testing.
For most couple s the chances of having a child with Sanfilippo are slim – about 1 in every 70,000 babies are born with Sanfilippo. However, if there is Sanfilippo in your family tree, the risk could be up to 180 times higher.
Research News & Glossary
For research-specific news, this news channel offers further analysis and explanation of scientific breakthroughs and annoucements. For more, click here
When a child is diagnosed, families go on a steep learning curve, learning medical terminology to help fully understand their child’s condition.
This occurs at a time of extreme stress. This handy glossary contains common words relating to Sanfilippo.
Meet other families
Click here to read about some of the other Australian families who have children battling Sanfilippo Syndrome – their respective paths to diagnosis and how each family copes with raising a terminally-ill child or children.
While there is no current cure or treatment, these families personify hope. Many of these courageous families have joined the Sanfilippo Children's Foundation in its fight to help fund clinical research.
What is a clinical trial?
Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. Parents and guardians choose to enrol their children in clinical trials for a range of reasons, including a desire to provide optimal care for their child and to contribute to improving the treatment and care of future generations of children.
For more information on clinical trials andfurther reading, click here
Latest information from our Resource Centre:
Rare disease organisations
There are various peak bodies and advocacy groups around the world that collectively represent rare diseases. The Sanfilippo Children's Foundation actively works with the following organisations. We encourage families to connect with or become members of the following rare disease organisations:
Click here for more.
There are many organisations like ours focussed on addressing Sanfilippo around the world. These can be found in the USA, Europe, South America and Asia. The Sanfilippo Children's Foundation actively works with many of these groups.
Click here for more.
There are various state and national disability support groups offering respite and information resources for the families of children battling Sanfilippo Syndrome.
Click here for more.
Special complimentry offer with CXC Financial Planners for Sanfilippo families
CXC Financial Planners has partnered with the Sanfilippo Children's Foundation to offer complimentary financial services to families with children battling Sanfilippo. They can meet clients in person in Sydney, Melbourne or Brisbane. Families outside these cities can work with CXC via phone and video link. For more information and to review the offer, click here
Find downloadable factsheet & order information resources
Need brochures to give to your GP, OT/speech therapist or primary/preschool teacher? Please email us at firstname.lastname@example.org and we will post you brochures to distribute.
Order your own copy of our Year in Review document. We have copies of the 2015 and 2016 documents available. Please email us email@example.com and we will post you a hardcopy.
Soft copies available to download here: 2015 and 2016
Visit our Resource Centre to download the latest information and factsheets on Sanfilippo Syndrome.
Order a SCF cap or T-shirt
We encourage children with Sanfilippo and family members and caregivers to wear our Sanfilippo Children's Foundation caps and T-shirts to help raise awareness of our cause and the vital work of our Foundation. We offer family members of children with Sanfilippo a 50% discount and the child themselves a free T-shirt upon request. (All merchandise purchased helps to fund research programs.)
If you would like to order a t-shirt for yourself or your child, please email your size and request to: firstname.lastname@example.org Check out the range in our online store here.