Foundation statement on video about Sanfilippo Syndrome circulating on social media

August 10, 2023

There are many compassionate and caring people who are just as eager as the families for there to be a cure for Sanfilippo Syndrome.

At present, there is no scientifically-proven and regulator-approved (FDA, EMA, etc.) therapy or treatment for Sanfilippo Syndrome.

We advise people to be wary of any internet video, article, or advertisement claiming to have a cure for Sanfilippo Syndrome that does not have significant published scientific backing and support. The internet is a place where anyone can say anything. And the rise of AI and video theft is making it easier for people to use other people’s content for dishonest reasons.

Cure Sanfilippo Foundation’s scientific staff and advisory committees monitor the scientific research around the world regarding Sanfilippo Syndrome and collaborate and communicate with the researchers regularly. There are several methods of treatment currently being explored by researchers around the world, including those driven by the Foundation. And while the research has come a long way in the past 10 years, there is still work to be done to achieve an approved treatment.

We look forward to the day when we can add a “Treatments for Sanfilippo” section to our website. But that day has not arrived yet.

When it does, the Foundation will make sure the entire global community is aware.

Whenever you have questions about Sanfilippo Syndrome and/or want to verify information seen on the internet and social media, you are welcome to visit the Foundation’s website and social media pages. Our content is up-to-date and lists research happening globally to find a treatment and cure.

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