Photo courtesy of Terrence Merrill

The Merrill Family Faces the Challenges of Sanfilippo Syndrome Every Day. Now They Are Fundraising to Help Others

• Post author:James Moore
• Post published:April 25, 2018
• Post category:Rare Disease/Sanfilippo Syndrome

According to a story from tapinto.net, the Merrill family was crushed upon learning that their five-year-old daughter Leila was born with Sanfilippo syndrome, a lysosomal storage disease that ultimately causes…

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Satellite Symposium Discusses Long-Term Outcomes for MPS IVA and VI Patients

• Post author:Patient Worthy Contributor
• Post published:February 7, 2018
• Post category:MPS IV (Morquio syndrome)/MPS VI (Maroteaux-Lamy syndrome)/Mucopolysaccharidosis

Yesterday, a group of experts presented "Changing lives: Long-term outcomes of MPS IVA & VI patients" at the Satellite Symposium sponsored by BioMarin. The program began with insights on the…

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One Girl’s Diagnosis Inspired a Foundation for Children with Sanfilippo Syndrome

• Post author:Octavia Walker
• Post published:January 25, 2018
• Post category:MPS III (Sanfilippo Syndrome)/Rare Disease

On the pages of the Abby Grace Foundation website, you will find over twenty beautiful pictures of different children. Most of the children are smiling. One looks into the camera…

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Trick or Treating Brought to Girl with Rare Disease

• Post author:Andres Rovira
• Post published:November 2, 2017
• Post category:MPS III (Sanfilippo Syndrome)

On Tuesday night, children hit the streets for their Halloween candy quest. Because of her rare disease, Emily Sawyer, had to stay in. But that didn't stop the community from…

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Making the Most of Every Moment with MPS III

• Post author:Trudy Horsting
• Post published:July 14, 2017
• Post category:MPS III (Sanfilippo Syndrome)/Rare Disease

Being told your child has a rare disease is devastating. Then imagine being told that there’s absolutely nothing you can do about it. That was the reality for these parents,…

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We’re On the Way to Treating an Untreatable Condition

• Post author:Sarah Lau
• Post published:June 19, 2017
• Post category:MPS III (Sanfilippo Syndrome)/Rare Disease

Lysogene, a biopharmaceutical company, announced at the end of May that enrollment in SAMOS (Sanfilippo A Multinational Observational Study) was completed. This is extremely exciting news for Sanfilippo syndrome (MPS…

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