30th Annual Family Conference – Ohio

The National MPS Society invites you to attend the 30th Annual Family Conference in Columbus, OH, August 4th-6th. The meeting begins Thursday evening with dinner and syndrome breakout sessions. Newly diagnosed families will join together Thursday evening with Dr. Joseph Muenzer and Lisa Berry, MS, CGC, to hear disease overviews, and share their experiences and strategies for coping. Register here – the deadline is July 6th!


We have entered a new and unbelievably exciting era for MPS diseases. Never before have there been so many companies developing treatments, many of which are focused on treating the central nervous system.

The Society is committed to providing you with current information; the conference will provide access to information on cutting-edge research and treatments. We are pleased to welcome Dr. Kevin Flanigan from Nationwide Children’s Hospital to discuss gene therapy. In addition, representatives from pharmaceutical companies working on treatments will be available throughout the conference—be sure to connect with them to hear firsthand about new treatments.

Perhaps you are curious about how a clinical trial happens and what is involved for patients. We can help answer some of your questions with Clinical Trials 101, hosted by a clinical trial nurse coordinator.

Don’t miss the panel discussion hosted by Dr. Flanigan, Dr. Muenzer, and chair of the Society’s Scientific Advisory Board, Dr. Patti Dickson. This session will provide information on current trials, emerging therapies and research.

The family dinner and adult social hour on Friday evening is a great opportunity to catch up with old friends and make new ones. This will be a super fun evening of caring, sharing and laughing with friends; childcare will be provided during the adult social time.

LOGO Final 2016 Run

On Saturday morning, join the National MPS Society for the Columbus 5K Walk/Run at the Scioto Audubon Park. The event will include a professionally timed 5K, along with a memorial ceremony and a special one-mile butterfly memorial walk. Visit the Columbus 5K Run Website. Every registrant will receive a run T-shirt. Buses will be provided for transportation. Early bird pricing is available. Families have the opportunity to build an easy website and team fundraise!

A special invitation is extended for your family to attend the conference. As always, there is no registration fee for individuals with MPS and related diseases, and complimentary childcare will be provided Thursday evening for the breakout sessions, and Friday and Saturday for the educational sessions. Please consider attending the annual meeting of the National MPS Society to learn about the activities of the Society.


Hotel and conference reservation deadlines are July 6, 2016.


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