Ben’s Dream Sanfilippo Research Foundation

Record last updated 2021/11/02 Comment on this info .Update this info

Narrative

Raises awareness and research funds for orphan diseases such as Sanfilippo Syndrome mucopolysaccharide disorders.  Sanfilippo Syndrome is a rare and catastrophic genetic disorder that takes its name from Dr. Sylvester Sanfilippo, one of the doctors who first described the condition in 1963. Sanfilippo Syndrome is a mucopolysaccharide disorder and is also known respectively as MPS III. It falls within a broader group of genetic disorders known as Lysosomal Storage Diseases. What these diseases share is an enzymatic defect which causes an accumulation of material within the cells of the body. The consequences vary greatly among the subgroups, ranging from a mild impact with a normal life expectancy to a severe and terminal outcome such as Sanfilippo Syndrome.

Service Types

• Family Support

Program Type

• Advocacy

Populations Served

• Sanfilippo Syndrome

Ages Served

• Birth to 3
• 3 - 4
• 5 - 8
• 9 - 13
• 14 - 18
• 19 - 22
• 23 – 59
• 60 +

Additional Information

• Fees: Free Service