Care and share this story! Help your Facebook friends learn more about Sanfilippo syndrome. [fbshare] Handsome Pol lives in Terrassa, Spain, with his family. Pol has Sanfilippo Type C. His mother, Belen, is a founder of Sanfilippo Barcelona. That organization is very active in encouraging and supporting research and awareness of Sanfilippo syndrome. Since Pol … Continue reading
Brooklyn, 3, and Jayden Boyce, 5, are the children of Stefanie and Justin Boyce. Both were diagnosed with Sanfilippo Syndrome in October, 2009. Stefanie and Justin have dedicated themselves to not only giving their own children the best life possible, but to telling their story and raising funds to build a completely handicap accessible home. … Continue reading
Here is a wonderful new video about lovely Charlotte, made available by the Swiss foundation for Sanfilippo research Fondation Sanfilippo Charlotte has Sanfilippo syndrome and is now 7 years old. She was 4 years old when the video was made. If you don’t already know about them, please familiarize yourself with this wonderful organization. We … Continue reading
Meet Evan. He’s 10, lives in Waco, Texas, with his family, and has Sanfilippo syndrome Type B, also called MPS III, Type B. He’s an active boy, still climbs up to slide down the slide and plays on the playground. But he speaks very little, and according to his mother, Kristi, his mental abilities are … Continue reading
EURORDIS is a non-governmental patient-driven alliance of European patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life for rare disease patients. Much of the current development and testing for MPS disease therapies seems to be centered in Europe. This seems particularly true considering the current climate … Continue reading
Lucas Hembree and his very special dog Juno just got a boost in helping to raise public awareness a LITTLE bit more for Sanfilippo children. Not only that, but Lucas and Juno just got a little bit more famous themselves (not that they weren’t already celebrities). Lucas’ father Chester has kindly shared the video with … Continue reading
Nina is 19 and lives in Germany with her family. Nina has Sanfilippo Type A. She still walks a little, although with difficulty and requires support. She does not speak, except that rarely she says ‘Mom.’ Her mother, Iris, has kindly supplied this very recent video of Nina.
DALLAS (CBSDFW.COM) – Reed Zeighami, who is just 3 years old, really needs some friends to lean on right now. He was diagnosed with a rare and fatal genetic disorder called MPS III Sanfilippo Syndrome. He is expected to grow somewhat normally, but then regress to the point where he can no longer walk, talk … Continue reading
From the Hill Country News Four years ago, when twins Logan and Austin were born into the Pacl family, originally from Cedar Park, no one could have guessed that within the first year of their lives one of the boys would be given a life expectancy of about 15 years. The Pacls have learned that … Continue reading
Introducing the Kapes family, who live in Philadelphia. Carl and Jennifer’s two sons Brayden and Ryan both have Sanfilippo Syndrome Type A. This news story appeared on NBC Philadelphia during the week of July 11th. View more videos at: http://www.nbcphiladelphia.com.