Author Archives: Mary Chapman

National MPS Society Awards $350K to Five Research Projects

As part of its Innovative Research Grants Initiative, the National MPS Society has awarded $350,000 to support five projects into potential ways of better treating mucolipidoses (ML) or mucopolysaccharidosis (MPS) diseases, such as Sanfilippo syndrome (MPS III). These awards are were given as “cycle 1” of the grant initiative, according…

EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…

‘Connor’s Crew’ on Board to Save Their Friend’s Life

They aren’t even teenagers yet, but Connor Dobbyn’s closest friends are engaged in a a most serious effort — to save their’s buddy’s life. The half-dozen or so 12-year-olds have known Dobbyn since kindergarten, long before he was diagnosed with Sanfilippo syndrome, a neurodegenerative disorder that renders the body…

May 15 Is International MPS Awareness Day

From “getting messy” in a workshop to participating in an art class, supporters globally are marking MPS Awareness Week, observed May 10-16. May 15 is International MPS Awareness Day. Awareness and education are vital to increasing the recognition, diagnosis, understanding, and management of mucopolysaccharidosis (MPS) disorders such as Sanfilippo…

MPS Society to Use £195,000 Grant to Reduce UK Patient Isolation

The MPS Society will use a £195,000 (about $268,000) award from the National Lottery Community Fund to build connections and reduce feelings of isolation — largely caused by the COVID-19 pandemic — among members of the U.K.’s mucopolysaccharidosis (MPS) community. The grant, awarded from monies raised by the…

‘Save Connor’ Campaign Ramps Up Ahead of Deadlines

Impassioned videos, including a new one about a 12-year-old who has Sanfilippo syndrome and his parents’ battle to save him, have raised more than $400,000 toward an unprecedented clinical study that could give the boy a chance at survival. The hope is that the videos will attract $3 million for…

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…