Newsletter - June 2008
Hunter Patients in the News
Nick Melnyk (Woodlands, Texas) was featured in the March issue of Bowling World in a bylined article written by his mother, Jan Melnyk. The article profiles Nick as a winner in the bowling alley and a champion in his fight with Hunter syndrome. His terrific bowling skills (246 best game and 150 average!) were showcased through several pictures in the article. Read the article online at www.bowlingworld.com.
James Oliver and his mother Deborah Martinez were recently featured in a news story on Univision's evening news in the Tampa, St. Petersburg and Sarasota areas of Florida.
Read more about the segment and watch the video here.
In the Spotlight
On May 15, close to 100 families, friends and healthcare providers gathered in Oakland, California, and Raleigh, North Carolina, to celebrate International MPS Awareness Day. Shire HGT partnered with Biomarin, Genzyme and the National MPS Society to host the two events.
Read more about the events.
Left to right, Nick Z., Sammy S., DiAngelo Z., Jack F.
Community Voices
Meet Nick and DiAngelo, two brothers with Hunter syndrome. Read their story to get to know them better and find out what they like to do to have fun.
Recent Event Highlights
National Organization of Rare Diseases (NORD)
25th Anniversary Gala
May 20, 2008 | Union Station, Washington, DC
The gala celebrated the 25th anniversary of the passing of the Orphan Drug Act in Congress and the founding of NORD. Since the Orphan Drug Act was passed, more than 300 treatments for rare diseases have been approved by the US Food and Drug Administration. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.