2019 SPIRIT Conference Disney

The National MPS Society invites you to attend the “Finding our SPIRIT” conference for adults (ages 18 and up) diagnosed with MPS and ML. We have worked with the Adult Resource Committee, spoken with you, and reviewed evaluations to determine things that are most important to you. Through this, we incorporated formal meeting time and time for you to spend together with your peers on your topics of interest.

We hope everyone can attend the family conference, as well as the SPIRIT conference. SPIRIT kicks off with a gathering at the Rainforest Café on Thursday at 11:00am, followed by the family conference beginning at 1:00pm on Thursday afternoon. Thursday night includes an informal social gathering at the hotel after breakout sessions. On Friday morning, everyone is invited to an exciting 5K Run/Walk, with sessions to follow for the rest of the day. An award ceremony and 45th anniversary celebration banquet on Friday night wraps up the family conference portion. Please see the annual family conference flyer for additional details and schedule.

The SPIRIT conference will take place from 8:30am – 3:00pm on Saturday, December 21. This focuses on the topics you have chosen, with sessions restricted to adults diagnosed with MPS or ML, ages 18 and up. You will have the afternoon free for time at one of the Disney theme parks! Caregivers may attend breakfast and lunch on Saturday and time at the theme park. Sessions are only open to meeting registrants (adults with MPS or ML) to allow for privacy and confidentiality during the discussions.

Criteria for applying:
  • Individual with MPS or ML
  • Member of the National MPS Society, with registration renewed for 2019
  • US resident
  • Age 18 or older

Registration package includes:

  • Travel to the conference (airfare or mileage reimbursement) for registrant and caregiver (if required), maximum $250 total reimbursement
  • Up to two nights at the Hilton Orlando Lake Buena Vista Hotel for one standard guest room and tax ($335.26 value)
  • Saturday breakfast and lunch
  • Complimentary one-day, single-park Disney theme park ticket

Registrants are responsible for making all travel arrangements, including hotel reservation, airfare, and ground transportation. Hotel guests are responsible for any incidental room charges such as phone calls, movies, or room service. A credit card is required to reserve the hotel room. Travel reimbursement is provided at the conference, although the registrant can request partial reimbursement prior to the conference if needed.

There is no registration fee for the SPIRIT conference; however, registrants must pay $50 to reserve a space for planning purposes and to allow for Disney theme park tickets to be ordered. This deposit will be refunded at the conference for those who attend. Complimentary child care will be provided during the educational sessions.

For more information, visit mpssociety.org, call Rebecca Schranz at 919-806-0101, or email rebecca@mpssociety.org. Information about accommodations and travel can be found in the enclosed National MPS Society Family Conference registration materials. Conference registration materials must be completed online or postmarked before November 26.

Information about accommodations and travel can be found in the Family Conference menu tab.