Get regular updates to your inbox.
The rare disease community includes some of the strongest people I know. Upon entering this clan in 2017, after my sister, Abby, was diagnosed with Sanfilippo syndrome, I found comfort in reading works by other rare disease siblings and family members. When I began this column in 2019,…
Read more
Being a parent is one of the joys in my life. I fiercely love my daughters and cannot imagine life without them. My youngest daughter, Emily, is 27 and teaches first grade. She’s the funniest person I know, and we have such a special relationship filled with laughter, prayer, and…
Sanfilippo syndrome is a genetic disorder that leads to a form of childhood dementia. Learn more about the disease here.
Sanfilippo is caused by mutations in one of four genes that produce the enzymes needed to break down heparan sulfate. Learn more about what causes the disease here.
Symptoms range from behavioral problems to developmental delays and sleep issues. Learn more about the symptoms of the disease here.
Get regular updates to your inbox.
