08/04/2022 | |||
7:00 am - 2:00 pm | No location | Board of Directors Meeting | |
2:00 pm - 8:00 pm | No location | Registration | |
2:45 pm - 9:45 pm | No location | Camp Courage Opens | |
3:00 pm - 3:30 pm | No location | Opening 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 pm | No location | Reflection Area | |
3:30 pm - 4:00 pm | No location | Emerging Science Overview for Families [More Info] Paul Harmatz, MD, Pediatric Gastroenterologist, UCSF Benioff Children's Hospitals | |
4:20 pm - 4:50 pm | No location | Newborn Screening Updates [More Info] Barbara Burton, MD, Professor of Pediatrics - Genetics, Birth Defects, and Metabolism, Northwestern University | |
4:50 pm - 5:15 pm | No location | MPS 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 pm | No location | MPS Music City Run, Rock and Roll 5K Package Pick-Up | |
5:15 pm - 6:00 pm | No location | Foundations 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 pm | No location | Welcome Buffet Dinner | |
6:00 pm - 7:30 pm | No location | Newly Diagnosed Family Dinner (diagnosed since December 2019) Overview and Coping with MPS and ML | |
7:30 pm - 8:30 pm | No location | Syndrome Breakout: MPS I | |
7:30 pm - 8:30 pm | No location | Syndrome Breakout: MPS II | |
7:30 pm - 8:30 pm | No location | Syndrome Breakout: MPS III | |
7:30 pm - 8:30 pm | No location | Syndrome Breakout: MPS IV | |
7:30 pm - 8:30 pm | No location | Syndrome Breakout: MPS VI | |
7:30 pm - 8:30 pm | No location | Syndrome Breakout: MPS VII | |
7:30 pm - 8:30 pm | No location | Syndrome Breakout: ML | |
7:30 pm - 9:30 pm | No location | Sibling Breakout Sessions | |
8:30 pm - 9:30 pm | No location | Family Breakout: Mothers | |
8:30 pm - 9:30 pm | No location | Family Breakout: Fathers | |
8:30 pm - 9:30 pm | No location | Family Breakout: Grandparents | |
8:30 pm - 9:30 pm | No location | Family Breakout: Adults with MPS/ML | |
9:45 pm | No location | Camp Courage Closes | |
08/05/2022 | |||
7:00 am - 8:00 am | No location | Breakfast Buffet | |
7:45 am | No location | Camp Courage Opens | |
8:00 am - 8:45 am | No location | Overview 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 pm | No location | Session I - MPS and ML Management and Care | |
8:45 am - 9:30 am | No location | Orthopedic 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 am | No location | Anesthesia and Airway Complications [More Info] Paul Harmatz, MD, Pediatric Gastroenterologist, UCSF Benioff Children's Hospitals | |
10:00 am - 10:30 am | No location | Bone 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 am | No location | Q & A Session | |
11:00 am - 11:55 pm | No location | Neurocognitive 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 pm | No location | Lunch Buffet | |
12:15 pm | No location | Camp Courage Closes | |
12:45 pm | No location | Camp Courage Opens | |
1:00 pm - 2:30 pm | No location | Session II - Patient and Family Warriors | |
1:00 pm - 1:45 pm | No location | Adults 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 pm | International Ballroom | Mission Fundraising - Support for Families, Support for Research [More Info] Tracy Kirby, Development Director, National MPS Society | |
2:15 pm - 2:45 pm | No location | Siblings of MPS and ML Patients | |
2:45 pm - 3:00 pm | No location | Health Break | |
2:30 pm - 5:00 pm | No location | Industry and Clinical Trial Updates | |
2:30 pm - 5:30 pm | No location | Session III - Translational Dialog with Key Stakeholders | |
5:45 pm | No location | Camp Courage Closes | |
6:30 pm | No location | Nashville Night on Your Own | |
08/06/2022 | |||
7:00 am - 7:45 am | No location | Grab and Go Breakfast and Board Buses | |
8:30 am - 11:00 am | No location | 5K Chip Timed Run | |
8:30 am - 11:00 am | No location | Family Walk | |
8:30 am - 11:00 am | No location | Celebration Lunch | |
8:30 am - 11:00 am | No location | Nashville MPS 5K Run, Family Walk, Celebration Lunch, & Entertainment | |
11:00 am - 11:30 am | No location | Board Buses Back to Sheraton; Return to Conference Sessions | |
11:45 am | No location | Camp Courage Opens | |
12:00 pm - 5:00 pm | No location | Navigating Therapies and Clinical Trials | |
12:00 pm - 5:00 pm | No location | Science on the Horizon | |
12:00 pm - 5:00 pm | No location | Session IV - Scientific Conference | |
12:00 pm - 5:00 pm | No location | Society-Sponsored Research Reports | |
1:00 pm - 3:00 pm | No location | Medical Trauma in Patients and Families [More Info] Melissa Hogan, JD, MPS II Parent, Founder of Project Alive | |
1:00 pm - 3:00 pm | No location | Genetic Testing/Family Planning [More Info] Barbara Burton, MD, Professor of Pediatrics - Genetics, Birth Defects, and Metabolism, Northwestern University | |
1:00 pm - 3:00 pm | No location | Navigating IEPs and Educational Needs [More Info] Leslie Urdaneta, MSW, LCSW, Director of Family Support & Communication, National MPS Society | |
1:00 pm - 3:00 pm | No location | Mental Health, Wellness, and Coping Strategies | |
2:00 pm - 3:00 pm | No location | Medical Trauma in Patients and Families | |
2:00 pm - 3:00 pm | No location | Navigating IEPs and Educational Needs | |
2:00 pm - 3:00 pm | No location | Genetic Testing/Family Planning | |
4:00 pm - 5:00 pm | No location | Mental health, wellness, and coping strategies | |
5:00 pm - 5:30 pm | No location | Remembrance Ceremony | |
6:30 pm - 8:30 pm | No location | National MPS Society Banquet and Awards | |
8:30 pm - 10:30 pm | No location | Nashville Party with onsite music and beverages |