Author Archives: Mary Chapman

Raising Awareness of Sanfilippo Syndrome

Sanfilippo syndrome is a neurodegenerative disorder that affects about 1 in 70,000 births. Raising awareness of this rare genetic disease could mean that more patients would benefit from earlier diagnosis and treatment. Here are some facts about Sanfilippo syndrome, and efforts to make it more widely…

Supporters Gear Up for Nov. 16 – World Sanfilippo Awareness Day

On Nov. 16, World Sanfilippo Awareness Day, supporters will bring global attention to the rare neurodegenerative disorder, hopefully sparking conversations globally about the community and its needs. From sharing images on social media and using a special Facebook photo frame, to displaying the official Awareness Day logo and participating…

Feeding Tubes for Sanfilippo Syndrome Patients

Eating and drinking can be problematic in Sanfilippo syndrome, a rare neurodegenerative disorder characterized by intellectual and behavioral disabilities. Finding out your child may need a feeding tube can be overwhelming, particularly when other medical issues are present. Here’s some information that may help. What is Sanfilippo syndrome? Sanfilippo syndrome…

AllStripes Asking Patients, Families to Share Health Records to Aid Research

Sanfilippo syndrome patients and caregivers are being asked to help speed the development of potential disease treatments by joining  AllStripes, and contributing their de-identified medical records to research efforts. The San Francisco-based company, previously known as RDMD, uses its rare disease research platform to aggregate and analyze such information,…