Newsletter - October 2008
Hunter Patients in the News
Zachary Townsley (Miramar, FL) was featured in an article in the June 9 edition of Newsweek, entitled “The Genetic Detectives.” The story reported on the launch of the Undiagnosed Diseases Program - a program funded by the National Institutes of Health to study, diagnosis and eventually treat patients with unidentified illnesses, Zachary’s diagnosis story was included as an example of how it often takes patients with rare diseases multiple years to be correctly diagnosed. You can read the full text of the article by searching for Genetic Detectives at www.newsweek.com.
In the Spotlight
The Hunt family hosted “River Run for Ryan,” their first walk/run, in Guttenberg, IA on August 30. Read about their first experience hosting a walk/run for MPS and find out more about other MPS walk/runs around the country. Go to Interview
Community Voices
Laurel Radius is a very busy stay at home mother of three. Her sons, Chip and David, have Hunter syndrome. Find out more about Laurel and her dedication to her family and to the greater MPS community.
Recent Event Highlights
10th International Symposium on Mucopolysaccharide
and Related Diseases
June 26-29, 2008 | Vancouver, BC, Canada
The theme of this year’s meeting was “Conquering MPS. Learn. Live. Cure.” The hosts of the meeting, The Canadian MPS Society, brought together researchers, physicians, other health care professionals, and patients and their families from all over the world to discuss the latest advancements in the understanding, care and management, and treatment of all the MPS disorders and related lysosomal storage diseases. Read More