36th Annual Family Conference Nashville 2022
 
08/04/2022
7:00 am - 2:00 pmNo locationBoard of Directors Meeting
2:00 pm - 8:00 pmNo locationRegistration
2:45 pm - 9:45 pmNo locationCamp Courage Opens
3:00 pm - 3:30 pmNo locationOpening Keynote Speaker - Mark Sands, PhD [More Info]
Mark Sands, PhD, Professor in the Departments of Medicine and Genetics, Washington University School of Medicine
3:00 pm - 10:00 pmNo locationReflection Area
3:30 pm - 4:00 pmNo locationEmerging Science Overview for Families [More Info]
Paul Harmatz, MD, Pediatric Gastroenterologist, UCSF Benioff Children's Hospitals
4:20 pm - 4:50 pmNo locationNewborn Screening Updates [More Info]
Barbara Burton, MD, Professor of Pediatrics - Genetics, Birth Defects, and Metabolism, Northwestern University
4:50 pm - 5:15 pmNo locationMPS I and MPS II Newborn Screening State by State Advocacy [More Info]
Terri Klein, MPA, President and CEO, National MPS Society
5:00 pm - 8:00 pmNo locationMPS Music City Run, Rock and Roll 5K Package Pick-Up
5:15 pm - 6:00 pmNo locationFoundations Roundtable - Collaborations to Help the Patient Community [More Info]
Terri Klein, MPA, President and CEO, National MPS Society
Melissa Hogan, JD, MPS II Parent, Founder of Project Alive
Cara O’Neill, MD, Co-Founder and Chief Science Officer, Cure Sanfilippo Foundation
6:00 pm - 7:30 pmNo locationWelcome Buffet Dinner
6:00 pm - 7:30 pmNo locationNewly Diagnosed Family Dinner (diagnosed since December 2019) Overview and Coping with MPS and ML
7:30 pm - 8:30 pmNo locationSyndrome Breakout: MPS I
7:30 pm - 8:30 pmNo locationSyndrome Breakout: MPS II
7:30 pm - 8:30 pmNo locationSyndrome Breakout: MPS III
7:30 pm - 8:30 pmNo locationSyndrome Breakout: MPS IV
7:30 pm - 8:30 pmNo locationSyndrome Breakout: MPS VI
7:30 pm - 8:30 pmNo locationSyndrome Breakout: MPS VII
7:30 pm - 8:30 pmNo locationSyndrome Breakout: ML
7:30 pm - 9:30 pmNo locationSibling Breakout Sessions
8:30 pm - 9:30 pmNo locationFamily Breakout: Mothers
8:30 pm - 9:30 pmNo locationFamily Breakout: Fathers
8:30 pm - 9:30 pmNo locationFamily Breakout: Grandparents
8:30 pm - 9:30 pmNo locationFamily Breakout: Adults with MPS/ML
9:45 pmNo locationCamp Courage Closes
 
08/05/2022
7:00 am - 8:00 amNo locationBreakfast Buffet
7:45 amNo locationCamp Courage Opens
8:00 am - 8:45 amNo locationOverview and Treatment Status of MPS and ML II/III [More Info]
Joseph Muenzer, MD, PhD, Bryson Distinguished Professor in Pediatric Genetics; Professor, Departments of Pediatrics and Genetics, University of North Carolina at Chapel Hill
8:00 am - 12:00 pmNo locationSession I - MPS and ML Management and Care
8:45 am - 9:30 amNo locationOrthopedic Updates in MPS [More Info]
Klane White, MD, Director, Skeletal Health Dysplasia; Medical Director, Orthopedic Research; Professor, Orthopedic Surgery, Seattle Childrens Hospital
9:30 am - 10:00 amNo locationAnesthesia and Airway Complications [More Info]
Paul Harmatz, MD, Pediatric Gastroenterologist, UCSF Benioff Children's Hospitals
10:00 am - 10:30 amNo locationBone Marrow Transplant Updates for MPS I [More Info]
Paul Orchard, MD, Medical Director, Inherited Metabolic and Storage Disease Program; Professor, Department of Pediatrics - Blood and Marrow Transplant & Cellular Therapy, University of Minnesota
10:40 am - 11:00 amNo locationQ & A Session
11:00 am - 11:55 pmNo locationNeurocognitive Findings in MPS [More Info]
Julie Eisengart, PhD, LP, Associate Professor, Department of Pediatrics; Director, Neurodevelopmental Program in Rare Disease, University of Minnesota
12:00 pm - 1:00 pmNo locationLunch Buffet
12:15 pmNo locationCamp Courage Closes
12:45 pmNo locationCamp Courage Opens
1:00 pm - 2:30 pmNo locationSession II - Patient and Family Warriors
1:00 pm - 1:45 pmNo locationAdults with MPS or ML Panel [More Info]
Laynie Holland, MPS I
Jason Madison, MPS II
Sheri Wise, MPS IVA, Board of Directors, National MPS Society
1:45 pm - 2:15 pmInternational BallroomMission Fundraising - Support for Families, Support for Research [More Info]
Tracy Kirby, Development Director, National MPS Society
2:15 pm - 2:45 pmNo locationSiblings of MPS and ML Patients
2:45 pm - 3:00 pmNo locationHealth Break
2:30 pm - 5:00 pmNo locationIndustry and Clinical Trial Updates
2:30 pm - 5:30 pmNo locationSession III - Translational Dialog with Key Stakeholders
5:45 pmNo locationCamp Courage Closes
6:30 pmNo locationNashville Night on Your Own
 
08/06/2022
7:00 am - 7:45 amNo locationGrab and Go Breakfast and Board Buses
8:30 am - 11:00 amNo location5K Chip Timed Run
8:30 am - 11:00 amNo locationFamily Walk
8:30 am - 11:00 amNo locationCelebration Lunch
8:30 am - 11:00 amNo locationNashville MPS 5K Run, Family Walk, Celebration Lunch, & Entertainment
11:00 am - 11:30 amNo locationBoard Buses Back to Sheraton; Return to Conference Sessions
11:45 amNo locationCamp Courage Opens
12:00 pm - 5:00 pmNo locationNavigating Therapies and Clinical Trials
12:00 pm - 5:00 pmNo locationScience on the Horizon
12:00 pm - 5:00 pmNo locationSession IV - Scientific Conference
12:00 pm - 5:00 pmNo locationSociety-Sponsored Research Reports
1:00 pm - 3:00 pmNo locationMedical Trauma in Patients and Families [More Info]
Melissa Hogan, JD, MPS II Parent, Founder of Project Alive
1:00 pm - 3:00 pmNo locationGenetic Testing/Family Planning [More Info]
Barbara Burton, MD, Professor of Pediatrics - Genetics, Birth Defects, and Metabolism, Northwestern University
1:00 pm - 3:00 pmNo locationNavigating IEPs and Educational Needs [More Info]
Leslie Urdaneta, MSW, LCSW, Director of Family Support & Communication, National MPS Society
1:00 pm - 3:00 pmNo locationMental Health, Wellness, and Coping Strategies
2:00 pm - 3:00 pmNo locationMedical Trauma in Patients and Families
2:00 pm - 3:00 pmNo locationNavigating IEPs and Educational Needs
2:00 pm - 3:00 pmNo locationGenetic Testing/Family Planning
4:00 pm - 5:00 pmNo locationMental health, wellness, and coping strategies
5:00 pm - 5:30 pmNo locationRemembrance Ceremony
6:30 pm - 8:30 pmNo locationNational MPS Society Banquet and Awards
8:30 pm - 10:30 pmNo locationNashville Party with onsite music and beverages