During the past 15 months we have chosen to respect the hardships of many families and communties during the CoVid 19 lockdowns and many who didn't have a steady source of income Our clinical trial of trehalose was delayed and hopefully will be back on track soon as hospitals are fully opened up and IRB's are being approved etc Meanwhile we have another trail coming up to fund as well So let the fundraisers and activities begin TSF will have another announcement coming soon that families may be excitied about ! Meanwhile there are two fundraisers scheduled next month Washington State for the bikers and friends of bikers and KY for the Sales of all things good, check the events page for details ! ...Read More
What is Sanfilippo Syndrome?
Sanfilippo syndrome is a genetic error of metabolism. It is a mucopolysaccharidoses, an MPS disorder, MPSlll. Mucopolysaccharides are long chains of sugar molecules, which are used in building connective tissues. When the body is finished using these molecules, it breaks them down, with enzymes, and disposes of them. Children with Sanfilippo syndrome are missing or are deficient in the enzyme to break down the molecules. Instead, the body stores these molecules in the cells. This storage causes progressive damage.