You Don’t Have Time To Be a Researcher
You are consumed with caring for your child with Sanfilippo Syndrome and don’t have the time or resources to constantly monitor disease research.
We do. With us, you have a constantly vigilant advocate. We spark, monitor, and contribute research. And we keep you updated on research and scientific developments.
Ways We Keep Partner Families Updated
Partner families are proactively kept up to date on what is happening through:
Family Conference Calls
We coordinate regular “Family Conference Calls” (typically every quarter) where we share the latest information, largely the progress of research and clinical trials, as well as current fundraising and awareness strategies and support.
We e-mail partner families with updates and important information, so you can read it at your convenience.
We share also share information via social media. Facebook is the Foundation’s most-active social media account.
We keep information about avenues being explored to treat or cure Sanfilippo, current clinical trials, and news from the scientific community on our website for convenient 24/7 access whenever you need it.