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Standing in front of my mirror, I fluffed my freshly curled hair. “Well,” I murmured, “let’s see how this goes.” I grabbed my bag and keys while calling for my daughter. It was time to drive her to school and get myself to work. Somehow, against all odds, I’d found…
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At 25 years old, thinking about my future is scary. It will be filled with many life changes and milestones. As a Sanfilippo sibling, my future will also be filled with devastating loss and grief. At 28, my sister, Abby, has Sanfilippo syndrome, a rare, neurodegenerative disease. It has…
Columnist Kelly Willis feels hope after attending a virtual conference on Sanfilippo syndrome, where research was discussed and contacts made.
Check out Sanfilippo Syndrome News’ collection of health insights, where you can find a variety of information relevant for patients and caregivers.
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.
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