Newsletter - December 2009

Family Voices

Meet the Shermantine brothers...

Brad and Gifford Shermantine are two brothers living in Canton, Georgia. Read about their experiences, hobbies, involvement in the "Run for Erin" Race, and advice for others living with Hunter Syndrome.

Meet Brad and Gifford in Community Voices

Hunter Patients in the News

NIH Announces Expansion of Rare Diseases Clinical Research Network
The National Institutes of Health announced a second phase of the Rare Diseases Clinical Research Network (RDCRN) including funds for 19 research consortia. The Rare Diseases Clinical Research Consortia and a Data Management Coordinating Center (DMCC) will be awarded a total of just over $117 million over the next five years. The research conducted with the new funding will explore the natural history, epidemiology, diagnosis, and treatment of more than 95 rare diseases.
Read more.

Brave Community

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

The National MPS Society will host its 2009 family conference in Disney World at Disney's Coronado Springs Resort in December 2009. More information will be available on the website. Please remember to renew your membership to take advantage of the Disney offerings.

OnePath.com

OnePathSM provides comprehensive support for patients, families and healthcare providers needing assistance with approved Shire HGT products/therapies.

Learn More:
http://www.onepath.com