THURSDAY, AUG. 4
8:00 am – 3:30 pm National MPS Society board meeting
1:00 pm – 4:00 pm Adult Resource Committee meeting (invitation
only)
5:00 pm – 9:00 pm Registration
5:00 pm – 7:00 pm Welcome buffet dinner celebrating 30 years
of conferences with dessert hosted by Abeona
6:00 pm – 9:00 pm SPIRIT gathering for adults with MPS and Related Diseases
6:30 pm Camp
Courage opens
7:00 pm – 9:00 pm Syndrome breakout sessions
9:15 pm Camp
Courage closes
FOR NEWLY DIAGNOSED FAMILIES
5:00 pm – 5:45 pm Registration and dinner for newly
diagnosed families (diagnosed in the last 12 months)
5:45 pm Camp
Courage opens for
families attending the newly diagnosed session
6:00 pm – 7:00 pm Overview and Coping with MPS and Related Diseases, Dr. Joseph Muenzer and Lisa Berry, MS, CGC
FRIDAY, AUG. 5
7:00 am – 9:00 am Continental breakfast
8:30 am Camp
Courage opens
8:45 am Welcome and opening announcements
9:00 am – 9:45 am Gene Therapy Overview, Dr. Kevin Flanigan
9:45 am – 10:30 am Emerging Therapies, Dr. Joseph Muenzer
10:30 am – 11:00 am Research Updates, Dr. Patti Dickson
11:00 am – 12:00 pm Panel Discussion: Drs. Dickson, Flanigan
and Muenzer
12:00 pm Camp
Courage closes
12:00 pm – 1:00 pm Lunch (provided) and annual general
membership meeting
1:30 pm- 1:45 pm Remembrance Ceremony
12:00 pm – 3:00 pm Columbus Crush MPS 5K Pre-Packet Pickup - Hotel Lobby
1:45 pm Camp
Courage opens
2:00 pm – 2:30 pm Pulmonary/Airway Issues, Dr. Bob Wood
2:30 pm – 3:00 pm Fundraising
3:00 pm – 3:15 pm Be A Powerful Advocate
3:15 pm – 4:15 pm How to Tell Your Story
4:30 pm Camp
Courage closes
5:00 pm-6:00 pm Planned Giving cocktail hour - Level L Pierce - networking, takeaways
6:00 pm Family dinner
7:15 pm Camp
Courage opens
7:30 pm – 9:30 pm Adult social hour
9:45 pm Camp
Courage closes
SATURDAY, AUG. 6
6:00 am – 8:00 am “To-go” breakfast
7:00 am – 8:30 am Bus to Scioto Audubon
Park for Columbus Crush MPS 5K Run/Walk
7:30 am Run/Walk registration opens
9:00 am Official start of Columbus MPS 5K Run
9:05 am Official start of Columbus MPS 5K Walk
10:00 am Remembrance Ceremony & 1 Mile Memorial Butterfly Walk
11:00 am Run Awards male/female & Courage Awards for all
individuals with MPS & ML attending
11:15 am – 12:30 pm Luncheon to celebrate being together at the Run/Walk
12:30 pm Buses back to hotel
1:15 pm Camp
Courage opens
1:30 pm – 3:00 pm Concurrent Sessions
• Management of MPS and Related Diseases, Dr. Joseph Muenzer
• Clinical Trials 101—How it Works
• Palliative Care
• Proper Body Mechanics
• How to Host a Regional Social Event
1:30 pm – 2:30 pm Sibling Workshop, ages 7–11
3:00 pm – 5:00 pm Target Breakouts: mothers, fathers, older siblings
(ages 12 and older) and extended relatives
1:30 pm – 5:00 pm CYCLE Conference
1:30 pm – 5:00 pm SPIRIT Conference
5:15 pm Camp
Courage closes
6:30 pm – 8:30 pm Awards Banquet
* Agenda subject to change.
