National MPS Society
Conference for Adults with MPS and ML
Finding our SPIRIT – Strength, Purpose,
Saturday, September 30, 2023, 9:30 a.m. - 4:00 p.m. EDT
Hyatt Regency Bethesda Hotel
AGENDA/SCHEDULE
Friday, September 29, 2023
5:30 pm – 8:00 pm SPIRIT Dinner, Matchbox 7278 Woodmont Ave., Bethesda
(Meet in Lobby and walk togther to restaurant)
8:30 pm – 11:00 pm Game Night, Hyatt Regency Bethesda – Rooftop Room
Saturday, September 30, 2023
9:00 am – 9:10 am Welcome Remarks!
9:10 am – 10:00 am Navigating Social Security and Medicaid
- Thomas Wier
10:00 am – 11:00 am Cannabidiol, medical marijuana and pain management:
considerations for MPS
- Lisa Garrity, PhD Cincinnati Children’s Hospital Medical Center
11:00 am – 12:00 pm Managing MPS and ML in daily living; Using tools for
wellness
- Carmen Sanchez, PhD, Licensed Clinical Psychologist
12:00 pm – 1:00 pm Lunch (Served at the Room)
1:00 pm – 2:30 pm Gaining Clinician and Research Insights – Ask the Doctor
1:00 pm – 1:30 pm Barbara Burton, MD – Lurie Children’s Hospital
1:30 pm – 2:00 pm Paul Harmatz, MD – UCSF Benioff Children’s Hospital
2:00 pm – 2:20pm Elizabeth Braunlin, MD University of Minnesota
2:20 pm – 2:50 pm Matthew Ellinwood, DVM, PhD National MPS Society
3:00 pm – 3:45 pm Resume Building, Amy Downing MBA National MPS Society
3:45 pm – 4:15 pm Adult Transitions, Questionnaire -Sheri Wise
CLICK HERE TO REGISTER: A separate SPIRIT conference registration is required
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 the most important things to you. Through this, we incorporated formal meeting time and time for you to spend 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 dinner gathering and social time on Friday night. Conference sessions for SPIRIT will take place on Saturday. Attendees are invited to join the banquet celebration dinner on Saturday.
The SPIRIT conference will occur from 10:00 a.m. – 3:00 p.m. on Saturday, September 30. 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 with friends or to go visit restaurants, shops, or entertainment in Bethesda!
Adults diagnosed with MPS or ML receive free registration for the family conference, SPIRIT conference, and one hotel night, and financial assistance (up to $350 in travel reimbursement) to attend.
Adult Conference and SPIRIT Scholarships
Some grant funding is available for registrants and, if necessary, for a caregiver or partner. The caregiver or partner can join the group during informal social gatherings on Friday. The sessions on Saturday are open only to SPIRIT meeting registrants (those diagnosed with MPS or ML) to allow for privacy and confidentiality during the discussions.
Scholarships are limited and must be completed through the online application system at this link: https://mps.onlineapplications.net/applications/ Scholarship applications are due by August 14, 2023 at 11:59 p.m. EDT.
Criteria for applying:
- Individual with MPS or ML
- Member in good standing of the National MPS Society, with membership renewed for 2023
- U.S. resident
- Age 18 or older
Conference scholarships include:
- Travel to the conference (airfare or mileage reimbursement) for registrant and caregiver (if required), maximum $350 total reimbursement. Registrant is responsible for making all travel arrangements.
- Up to one additional night at Hyatt Regency Bethesda (one standard guest room and tax, valued at $179.67/night). Guest is responsible for incidental room charges such as phone calls, movies, or room service. (All SPIRIT attendees receive one night paid hotel room with SPIRIT registration.)
Registrants are encouraged to register for the 37th Annual National MPS Society Family Conference which begins Thursday, September 28. There are no registration fees for adults with MPS and ML to attend the family conference.
While this conference has no registration fee, registrants must pay a $50 deposit upon registration to hold their space so we can adequately plan. This deposit will be refunded to those individuals who attend the conference. Registrants are responsible for making all travel arrangements including hotel reservations, airfare, and ground transportation. Complimentary child care will be provided during the educational sessions.
Due to limited funding, registrations will be accepted on a first-come, first-served basis. We encourage you to register early. Upon acceptance of your registration, you will be instructed to book your hotel room and arrange your transportation to the hotel. The Society will pay the cost of your hotel room and the tax. Travel reimbursement is provided at the conference, although the registrant can request partial reimbursement before the conference.
For more information, contact the Society at 919-806-0101 with questions or e-mail leslie@mpssociety.org. Information about accommodations and travel can be found on the conference website. You must register and book your accommodations before August 28, 2023.
