Newsletter

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December 2009 Newsletter

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

May 2009 Newsletter

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

October 2008 Newsletter

MPS Awareness Celebration

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

June 2008 Newsletter

MPS Awareness Celebration

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

Left to right: Nick Z, Sammy S, DiAngelo Z, Jack F

Related Links

National MPS Society

www.mpssociety.org

The National MPS Society supports families and individuals affected by MPS and related diseases. They work to advance scientific research and increase public and professional awareness of MPS.

MPS ML Forum Dot Com

www.mpsforum.com

A worldwide connection for families of MPS and ML disorders

LSDSonline.com

www.lsdsonline.com

A support forum for families affected by lysosomal storage disorders