The National MPS Society invites you to attend its 29th Annual Family Conference in Salt Lake City, UT. The meeting begins Thursday evening with dinner and syndrome breakout sessions. Newly diagnosed families will join together Thursday evening with Dr. Joseph Muenzer and Dr. Kimberly Frye to hear disease overviews, and share their experiences and strategies for coping.
You’ve been hearing and reading about the many companies with FDA-approved treatments for MPS diseases that are in clinical trials, or are moving toward clinical trials in the next 12–24 months. We truly 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, so we arranged for representatives from these companies to be available Friday afternoon for an “open house.” This will allow meeting attendees to personally talk with these representatives and hear firsthand about new treatments.
Dr. Laurie Muldowney, medical officer for the FDA’s Center for Drug Evaluation and Research, will speak Friday about the FDA approval process for new treatments. You also will hear from a family participating in a clinical trial about their experience.
On Friday evening, join the National MPS Society for the “Run the Night–5K Walk/Run” at Liberty Park in Salt Lake City. The event will include a professionally timed 5K along with an illuminated memorial walk. The course is paved and will lap Liberty Park.
To Register, or set up a team visit https://support.mpssocietygive.org/saltlakecity5k
Every registrant will receive a glow-in the dark T-shirt. Buses will be provided for transportation. Early bird pricing available. Families have the opportunity to build an easy website and team fundraise!
The Society is again hosting a party Saturday night after the banquet for all adults. This will be a super fun evening with music, dancing and laughter with friends; childcare will be provided!
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 August 27, 2015, but remember to reserve your room early to guarantee you won't miss out!
