Newsletter Archives
Meet Kyle:
Meet Kyle Plunkett, a 17 year old living in Massachusetts, as he chronicles his daily activities and describes living with Hunter syndrome.
MPS Cup:
On May 1, more than 100 people turned out to support the First Annual MPS Fantasy Hockey Game & Gala fundraiser for the MPS Society.
International MPS Awareness Day, 2010:
On May 15, we joined the National MPS Society to celebrate International MPS Awareness Day. MPS Families across the globe joined to raise awareness of MPS Disorders and to remember all the children and adults who suffer from MPS and related diseases.
Website Spotlight:
In April, the National MPS Society and the International MPS Network both launched new sites. The new sites have a fresh new look, with a lot of great new information. Take a look at MPSSociety.org and IMPSN.org
Family Voices: Meet the Shermantine brothers
Hunter Families News and Announcements:
- NIH Announces Expansion of Rare Diseases Clinical Research Network
Website Spotlight: OnePath.com OnePathSM provides comprehensive support for patients, families and healthcare providers needing assistance with approved Shire HGT products/therapies.
BraveCommunity.com
In July, 2009 we launched BraveCommunity.com to a select group of people. We'd like to thank those of you who participated for your involvement and feedback on the initial site. We launched the new site last month with a new design and enhanced experience. For more information about Brave Community, please visit BraveCommunity.com
Family Voices: Meet the Parents and Grandparents of Jack Frye
Hunter Families News and Announcements:
- Celebrating Global Rare Disease Day 2009
- Hunter Family’s Home Gets a Miracle Makeover
- MPS Fundraiser Held in Long Beach, CA
Website Spotlight: FamilyVoices.org Helpful insurance resources and information for families with disabled children.
What's New at Hunterpatients.com:
- Learn about the Individual with Disabilities Education Act (IDEA)
- Patients & families needed for a new study on the social issues facing people with Hunter syndrome
Hunter Patients in the News: Zachary Townsley (Miramar, FL)
In the Spotlight: Organizing "River Run for Ryan"- An Interview with Marie and Jonathan Hunt
Recent Event Highlights: 10th International Symposium on Mucopolysaccharide and Related Disorders
Community Voices: Laurel Radius, Chip and David’s Mom
Hunter Patients in the News: Nick Melnyk and James Oliver
In the Spotlight: National MPS Awareness Day Highlights
Community Voices: Meet Nick and DiAngelo, two brothers with Hunter syndrome