| 09/12/2020 | |||
| 8:00 pm | |||
| 09/11/2020 | |||
| 8:00 pm - 9:00 pm | Friday Evening Syndrome-Specific Breakout Session | ||
| 9:00 pm - 10:00 pm | Friday Evening Connection-Specific Breakout Session | ||
| 09/12/2020 | |||
| 9:45 am - 10:00 am | National MPS Society - Pivoting In a New Climate Lisa Todd, MPS II parent, Board of Directors, National MPS Society | ||
| General Main Session | |||
| 09/12/2020 | |||
| 10:00 am - 10:30 am | KEYNOTE SPEAKER - Navigating MPS During the COVID-19 Pandemic Heather A. Lau, MD, Assistant Professor, Department of Neurology and Director of the Lysosomal Storage Disease Program, NYU Grossman School of Medicine | ||
| 10:30 am - 11:15 am | General MPS Overview and Clincal Trial Updates During a Pandemic Joseph Muenzer, MD, PhD, University of North Carolina Medical Genetics | ||
| 11:15 am - 11:45 am | Newborn Screening: What is It? How Will It Help the Diagnostic Journey? Barbara Burton, MD, Professor of Pediatrics (Genetics, Birth Defects, and Metabolism), Northwestern University Feinberg School of Medicine - Ann & Robert H. Lurie Children's Hospital of Chicago | ||
| 11:45 am - 11:50 am | General Main Session Q&A | ||
| 11:50 am - 12:00 pm | Visionary Leadership Award presented to Barbara Wedehase, MSW, GGC Matthew Ellinwood, DVM, PhD, National MPS Society | ||
| SESSION II Management and Care for MPS and ML (Track I) | |||
| 09/12/2020 | |||
| 12:45 pm - 1:15 pm | Natural History of MPS Disorders - What Do We Know About Cognition Over Time? Elsa G. Shapiro, PhD, ABPP, Professor of Pediatrics and Neurology, Division of Pediatric Behavioral Neuroscience, Shapiro Neuropsychology Consulting | ||
| 1:15 pm - 1:45 pm | Neurobehavioral Manifestations and Otehr Considerations in MPS Julie Eisengart, PhD, LP, Pediatric Neuropsychologist and Assistant Professor at the University of Minnesota | ||
| 1:45 pm - 1:55 pm | Neurocognitive Q&A; Concurrent Health Break | ||
| 1:55 pm - 2:40 pm | Orthopedic Management of the Mucopolysaccharidoses Klane White, MD, Seattle Childrens Hospital | ||
| 2:40 pm - 3:25 pm | Airway Problems with Patients of Mucopolysaccharidoses Robert Wood PhD, MD, Cincinnati Children's Hospital | ||
| 3:25 pm - 3:30 pm | Orthopedic, Pulmonary, and Advanced Care Q&A | ||
| 3:30 pm - 3:55 pm | Mucolipidosis - Building a Research Construct | ||
| SESSION III Science in MPS and ML (Track II) | |||
| 09/12/2020 | |||
| 12:45 pm - 1:30 pm | Gene Therapy Overview | ||
| 1:30 pm - 2:00 pm | Pharmacological Presentations Matthew Ellinwood, DVM, PhD, National MPS Society | ||
| Session IV Industry Updates | |||
| 09/12/2020 | |||
| 2:00 pm - 3:55 pm | Industry Updates (Sanofi-Genzyme, Abeona Therapeutics, REGENXBIO, Denali Therapeutics, BioMarin Pharmaceuticals, JCR Pharmaceuticals, Takeda, Ultragenyx Pharmaceutical, Orchard Therapeutics) | ||
| SESSION V - Charting our Course! | |||
| 09/12/2020 | |||
| 4:00 pm - 4:20 pm | Advocacy - WE NEED YOU for Newborn Screening! Christine Tippett, MPS IV Parent, Board of Directors, National MPS Society | ||
| 4:20 pm - 4:40 pm | Fundraising - Pivoting During the Pandemic - National Bake Sale Announcement! Larry Kirch, MPS III Parent, Board of Directors , National MPS Society | ||
| 4:40 pm - 4:45 pm | Conclusion and Wrap-Up | ||
| 09/12/2020 | |||
| 8:00 pm | |||
| 09/11/2020 | |||
| 8:00 pm - 9:00 pm | Friday Evening Syndrome-Specific Breakout Session | ||
| 9:00 pm - 10:00 pm | Friday Evening Connection-Specific Breakout Session | ||
| 09/12/2020 | |||
| 9:45 am - 10:00 am | National MPS Society - Pivoting In a New Climate | ||
| General Main Session | |||
| 09/12/2020 | |||
| 10:00 am - 10:30 am | KEYNOTE SPEAKER - Navigating MPS During the COVID-19 Pandemic | ||
| 10:30 am - 11:15 am | General MPS Overview and Clincal Trial Updates During a Pandemic | ||
| 11:15 am - 11:45 am | Newborn Screening: What is It? How Will It Help the Diagnostic Journey? | ||
| 11:45 am - 11:50 am | General Main Session Q&A | ||
| 11:50 am - 12:00 pm | Visionary Leadership Award presented to Barbara Wedehase, MSW, GGC | ||
| SESSION II Management and Care for MPS and ML (Track I) | |||
| 09/12/2020 | |||
| 12:45 pm - 1:15 pm | Natural History of MPS Disorders - What Do We Know About Cognition Over Time? | ||
| 1:15 pm - 1:45 pm | Neurobehavioral Manifestations and Otehr Considerations in MPS | ||
| 1:45 pm - 1:55 pm | Neurocognitive Q&A; Concurrent Health Break | ||
| 1:55 pm - 2:40 pm | Orthopedic Management of the Mucopolysaccharidoses | ||
| 2:40 pm - 3:25 pm | Airway Problems with Patients of Mucopolysaccharidoses | ||
| 3:25 pm - 3:30 pm | Orthopedic, Pulmonary, and Advanced Care Q&A | ||
| 3:30 pm - 3:55 pm | Mucolipidosis - Building a Research Construct | ||
| SESSION III Science in MPS and ML (Track II) | |||
| 09/12/2020 | |||
| 12:45 pm - 1:30 pm | Gene Therapy Overview | ||
| 1:30 pm - 2:00 pm | Pharmacological Presentations | ||
| Session IV Industry Updates | |||
| 09/12/2020 | |||
| 2:00 pm - 3:55 pm | Industry Updates (Sanofi-Genzyme, Abeona Therapeutics, REGENXBIO, Denali Therapeutics, BioMarin Pharmaceuticals, JCR Pharmaceuticals, Takeda, Ultragenyx Pharmaceutical, Orchard Therapeutics) | ||
| SESSION V - Charting our Course! | |||
| 09/12/2020 | |||
| 4:00 pm - 4:20 pm | Advocacy - WE NEED YOU for Newborn Screening! | ||
| 4:20 pm - 4:40 pm | Fundraising - Pivoting During the Pandemic - National Bake Sale Announcement! | ||
| 4:40 pm - 4:45 pm | Conclusion and Wrap-Up | ||
| 34th Annual Family Conference, Virtual Event |
| 09/11 - 09/12/2020 |
| 8:00 pm - 5:00 pm |
| 09/12/2020 | |||
| 8:00 pm | |||
| 09/11/2020 | |||
| 8:00 pm - 9:00 pm | Friday Evening Syndrome-Specific Breakout Session | ||
| 9:00 pm - 10:00 pm | Friday Evening Connection-Specific Breakout Session | ||
| 09/12/2020 | |||
| 9:45 am - 10:00 am | National MPS Society - Pivoting In a New Climate | ||
| General Main Session | |||
| 09/12/2020 | |||
| 10:00 am - 10:30 am | KEYNOTE SPEAKER - Navigating MPS During the COVID-19 Pandemic | ||
| 10:30 am - 11:15 am | General MPS Overview and Clincal Trial Updates During a Pandemic | ||
| 11:15 am - 11:45 am | Newborn Screening: What is It? How Will It Help the Diagnostic Journey? | ||
| 11:45 am - 11:50 am | General Main Session Q&A | ||
| 11:50 am - 12:00 pm | Visionary Leadership Award presented to Barbara Wedehase, MSW, GGC | ||
| SESSION II Management and Care for MPS and ML (Track I) | |||
| 09/12/2020 | |||
| 12:45 pm - 1:15 pm | Natural History of MPS Disorders - What Do We Know About Cognition Over Time? | ||
| 1:15 pm - 1:45 pm | Neurobehavioral Manifestations and Otehr Considerations in MPS | ||
| 1:45 pm - 1:55 pm | Neurocognitive Q&A; Concurrent Health Break | ||
| 1:55 pm - 2:40 pm | Orthopedic Management of the Mucopolysaccharidoses | ||
| 2:40 pm - 3:25 pm | Airway Problems with Patients of Mucopolysaccharidoses | ||
| 3:25 pm - 3:30 pm | Orthopedic, Pulmonary, and Advanced Care Q&A | ||
| 3:30 pm - 3:55 pm | Mucolipidosis - Building a Research Construct | ||
| SESSION III Science in MPS and ML (Track II) | |||
| 09/12/2020 | |||
| 12:45 pm - 1:30 pm | Gene Therapy Overview | ||
| 1:30 pm - 2:00 pm | Pharmacological Presentations | ||
| Session IV Industry Updates | |||
| 09/12/2020 | |||
| 2:00 pm - 3:55 pm | Industry Updates (Sanofi-Genzyme, Abeona Therapeutics, REGENXBIO, Denali Therapeutics, BioMarin Pharmaceuticals, JCR Pharmaceuticals, Takeda, Ultragenyx Pharmaceutical, Orchard Therapeutics) | ||
| SESSION V - Charting our Course! | |||
| 09/12/2020 | |||
| 4:00 pm - 4:20 pm | Advocacy - WE NEED YOU for Newborn Screening! | ||
| 4:20 pm - 4:40 pm | Fundraising - Pivoting During the Pandemic - National Bake Sale Announcement! | ||
| 4:40 pm - 4:45 pm | Conclusion and Wrap-Up | ||
| 09/12/2020 | |||
| 8:00 pm | |||
| 09/11/2020 | |||
| 8:00 pm - 9:00 pm | Friday Evening Syndrome-Specific Breakout Session | ||
| 9:00 pm - 10:00 pm | Friday Evening Connection-Specific Breakout Session | ||
| 09/12/2020 | |||
| 9:45 am - 10:00 am | National MPS Society - Pivoting In a New Climate | ||
| General Main Session | |||
| 09/12/2020 | |||
| 10:00 am - 10:30 am | KEYNOTE SPEAKER - Navigating MPS During the COVID-19 Pandemic | ||
| 10:30 am - 11:15 am | General MPS Overview and Clincal Trial Updates During a Pandemic | ||
| 11:15 am - 11:45 am | Newborn Screening: What is It? How Will It Help the Diagnostic Journey? | ||
| 11:45 am - 11:50 am | General Main Session Q&A | ||
| 11:50 am - 12:00 pm | Visionary Leadership Award presented to Barbara Wedehase, MSW, GGC | ||
| SESSION II Management and Care for MPS and ML (Track I) | |||
| 09/12/2020 | |||
| 12:45 pm - 1:15 pm | Natural History of MPS Disorders - What Do We Know About Cognition Over Time? | ||
| 1:15 pm - 1:45 pm | Neurobehavioral Manifestations and Otehr Considerations in MPS | ||
| 1:45 pm - 1:55 pm | Neurocognitive Q&A; Concurrent Health Break | ||
| 1:55 pm - 2:40 pm | Orthopedic Management of the Mucopolysaccharidoses | ||
| 2:40 pm - 3:25 pm | Airway Problems with Patients of Mucopolysaccharidoses | ||
| 3:25 pm - 3:30 pm | Orthopedic, Pulmonary, and Advanced Care Q&A | ||
| 3:30 pm - 3:55 pm | Mucolipidosis - Building a Research Construct | ||
| SESSION III Science in MPS and ML (Track II) | |||
| 09/12/2020 | |||
| 12:45 pm - 1:30 pm | Gene Therapy Overview | ||
| 1:30 pm - 2:00 pm | Pharmacological Presentations | ||
| Session IV Industry Updates | |||
| 09/12/2020 | |||
| 2:00 pm - 3:55 pm | Industry Updates (Sanofi-Genzyme, Abeona Therapeutics, REGENXBIO, Denali Therapeutics, BioMarin Pharmaceuticals, JCR Pharmaceuticals, Takeda, Ultragenyx Pharmaceutical, Orchard Therapeutics) | ||
| SESSION V - Charting our Course! | |||
| 09/12/2020 | |||
| 4:00 pm - 4:20 pm | Advocacy - WE NEED YOU for Newborn Screening! | ||
| 4:20 pm - 4:40 pm | Fundraising - Pivoting During the Pandemic - National Bake Sale Announcement! | ||
| 4:40 pm - 4:45 pm | Conclusion and Wrap-Up | ||
| 09/12/2020 | |||
| 8:00 pm | |||
| 09/11/2020 | |||
| 8:00 pm - 9:00 pm | Friday Evening Syndrome-Specific Breakout Session | ||
| 9:00 pm - 10:00 pm | Friday Evening Connection-Specific Breakout Session | ||
| 09/12/2020 | |||
| 9:45 am - 10:00 am | National MPS Society - Pivoting In a New Climate | ||
| General Main Session | |||
| 09/12/2020 | |||
| 10:00 am - 10:30 am | KEYNOTE SPEAKER - Navigating MPS During the COVID-19 Pandemic | ||
| 10:30 am - 11:15 am | General MPS Overview and Clincal Trial Updates During a Pandemic | ||
| 11:15 am - 11:45 am | Newborn Screening: What is It? How Will It Help the Diagnostic Journey? | ||
| 11:45 am - 11:50 am | General Main Session Q&A | ||
| 11:50 am - 12:00 pm | Visionary Leadership Award presented to Barbara Wedehase, MSW, GGC | ||
| SESSION II Management and Care for MPS and ML (Track I) | |||
| 09/12/2020 | |||
| 12:45 pm - 1:15 pm | Natural History of MPS Disorders - What Do We Know About Cognition Over Time? | ||
| 1:15 pm - 1:45 pm | Neurobehavioral Manifestations and Otehr Considerations in MPS | ||
| 1:45 pm - 1:55 pm | Neurocognitive Q&A; Concurrent Health Break | ||
| 1:55 pm - 2:40 pm | Orthopedic Management of the Mucopolysaccharidoses | ||
| 2:40 pm - 3:25 pm | Airway Problems with Patients of Mucopolysaccharidoses | ||
| 3:25 pm - 3:30 pm | Orthopedic, Pulmonary, and Advanced Care Q&A | ||
| 3:30 pm - 3:55 pm | Mucolipidosis - Building a Research Construct | ||
| SESSION III Science in MPS and ML (Track II) | |||
| 09/12/2020 | |||
| 12:45 pm - 1:30 pm | Gene Therapy Overview | ||
| 1:30 pm - 2:00 pm | Pharmacological Presentations | ||
| Session IV Industry Updates | |||
| 09/12/2020 | |||
| 2:00 pm - 3:55 pm | Industry Updates (Sanofi-Genzyme, Abeona Therapeutics, REGENXBIO, Denali Therapeutics, BioMarin Pharmaceuticals, JCR Pharmaceuticals, Takeda, Ultragenyx Pharmaceutical, Orchard Therapeutics) | ||
| SESSION V - Charting our Course! | |||
| 09/12/2020 | |||
| 4:00 pm - 4:20 pm | Advocacy - WE NEED YOU for Newborn Screening! | ||
| 4:20 pm - 4:40 pm | Fundraising - Pivoting During the Pandemic - National Bake Sale Announcement! | ||
| 4:40 pm - 4:45 pm | Conclusion and Wrap-Up | ||
| 09/12/2020 | |||
| 8:00 pm | |||
| 09/11/2020 | |||
| 8:00 pm - 9:00 pm | Friday Evening Syndrome-Specific Breakout Session | ||
| 9:00 pm - 10:00 pm | Friday Evening Connection-Specific Breakout Session | ||
| 09/12/2020 | |||
| 9:45 am - 10:00 am | National MPS Society - Pivoting In a New Climate | ||
| General Main Session | |||
| 09/12/2020 | |||
| 10:00 am - 10:30 am | KEYNOTE SPEAKER - Navigating MPS During the COVID-19 Pandemic | ||
| 10:30 am - 11:15 am | General MPS Overview and Clincal Trial Updates During a Pandemic | ||
| 11:15 am - 11:45 am | Newborn Screening: What is It? How Will It Help the Diagnostic Journey? | ||
| 11:45 am - 11:50 am | General Main Session Q&A | ||
| 11:50 am - 12:00 pm | Visionary Leadership Award presented to Barbara Wedehase, MSW, GGC | ||
| SESSION II Management and Care for MPS and ML (Track I) | |||
| 09/12/2020 | |||
| 12:45 pm - 1:15 pm | Natural History of MPS Disorders - What Do We Know About Cognition Over Time? | ||
| 1:15 pm - 1:45 pm | Neurobehavioral Manifestations and Otehr Considerations in MPS | ||
| 1:45 pm - 1:55 pm | Neurocognitive Q&A; Concurrent Health Break | ||
| 1:55 pm - 2:40 pm | Orthopedic Management of the Mucopolysaccharidoses | ||
| 2:40 pm - 3:25 pm | Airway Problems with Patients of Mucopolysaccharidoses | ||
| 3:25 pm - 3:30 pm | Orthopedic, Pulmonary, and Advanced Care Q&A | ||
| 3:30 pm - 3:55 pm | Mucolipidosis - Building a Research Construct | ||
| SESSION III Science in MPS and ML (Track II) | |||
| 09/12/2020 | |||
| 12:45 pm - 1:30 pm | Gene Therapy Overview | ||
| 1:30 pm - 2:00 pm | Pharmacological Presentations | ||
| Session IV Industry Updates | |||
| 09/12/2020 | |||
| 2:00 pm - 3:55 pm | Industry Updates (Sanofi-Genzyme, Abeona Therapeutics, REGENXBIO, Denali Therapeutics, BioMarin Pharmaceuticals, JCR Pharmaceuticals, Takeda, Ultragenyx Pharmaceutical, Orchard Therapeutics) | ||
| SESSION V - Charting our Course! | |||
| 09/12/2020 | |||
| 4:00 pm - 4:20 pm | Advocacy - WE NEED YOU for Newborn Screening! | ||
| 4:20 pm - 4:40 pm | Fundraising - Pivoting During the Pandemic - National Bake Sale Announcement! | ||
| 4:40 pm - 4:45 pm | Conclusion and Wrap-Up | ||
