2018 Medical Symposium
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1 2018 Medical Symposium Leukodystrophy Care Network Leukodystrophies Newborn Screening Research July 16-19, 2018 Holiday Valley Resort Ellicottville, NY
2 Schedule Overview Monday July 16, 2018 Arrive 4:00pm 7:15pm Holiday Valley Resort, Ellicottville NY Registration Opens Tamarack Club Lobby Welcome Dinner Sunrise, Holiday Valley Lodge Tuesday July 17, :00 8:00am Breakfast Sunrise, Holiday Valley Lodge Session I Leukodystrophy Newborn Screening 8:00am 12:00pm, 2 nd Floor, Holiday Valley Lodge 12:00 12:55pm Lunch - Sunrise, Holiday Valley Lodge Session II Standards of Care for Leukodystrophy NBS 12:55 5:00pm, 2 nd Floor, Holiday Valley Lodge 6:30pm Dinner - Sunrise, Holiday Valley Lodge Wednesday July 18, :00 9:00am Breakfast Sunrise, Holiday Valley Lodge Session III Leukodystrophy Care Network (LCN) 9:00am 4:15pm, 2 nd Floor, Holiday Valley Lodge 12:15pm Lunch - Sunrise, Holiday Valley Lodge 7:00pm 20 th Anniversary Celebration Dinner -Sunrise, Holiday Valley Lodge *LCN Care Coordinator Meeting 4:30pm 6:00pm, Birdie - Holiday Valley Lodge Thursday July 19, :00 9:30am Breakfast - Sunrise, Holiday Valley Lodge Session IV Presentations to Leukodystrophy Families 9:30am 2:30pm, 2 nd Floor, Holiday Valley Lodge 11:45 12:45pm Lunch - Sunrise, Holiday Valley Lodge Save the Date! 2019 Hunter s Hope Medical Symposium July 22-25, 2019
3 Tuesday, July 17 th 7:00am Breakfast Sunrise, HV Lodge Session I and II, 2 nd Floor Holiday Valley Lodge 8am 12:00pm Session I: Leukodystrophy Newborn Screening and Treatment 8:00 10:00am Leukodystrophy Newborn Screening (NBS) State Updates 8:00 8:20am New York Joseph Orsini, PhD 8:20 8:35am Missouri Esperenza Font- Montgomery, MD 8:35 8:55am Kentucky Dietrich Matern, MD, PhD and Darrin Sevier 8:55 9:10am Ohio Margie Ream, MD, PhD 9:10 9:30am Tennessee George Dizikes, PhD 9:30 9:45am Illinois Khaja Basheeruddin, PhD 9:45 10:00am MLD NBS Michael Gelb, PhD 10:00 10:25am Krabbe NBS Clinical Practice Guidelines (CPGs) Jennifer Kwon, MD 10:25 12:00pm Leukodystrophy Treatment 10:25 10:55am Krabbe Disease, MLD and ALD Joanne Kurtzberg, MD 10:55 11:15am Krabbe Disease David Wenger, PhD 11:15 11:40am ALD Clinical Trial Florian Eichler, MD 11:40 12:00pm Family Perspective 12:00 12:55pm Lunch Sunrise, HV Lodge 12:55 5:00pm Session II: Standards of Care for Leukodystrophy NBS 12:55 1:15pm Krabbe NBS CPGs for Late Onset Krabbe Disease (LOKD) Joseph Orsini, PhD 1:15 1:30pm Psychosine as 2 nd Tier Test for Krabbe NBS Dietrich Matern, MD, PhD 1:30 1:45pm High sensitivity GALC Assay Michael Gelb, PhD 1:45 2:05pm LOKD Cases Treated with Hematopoietic Stem Cell Joanne Kurtzberg, MD Transplantation 2:05 2:25pm Presentation of LOKD NBS Cases Jennifer Kwon, MD 2:25 3:25pm Recommended Follow Up for Possible LOKD Cases 3:25 5:00pm ALD NBS Follow Up Ali Fatemi, MD, Elisa Seeger 6:30pm Dinner Sunrise, HV Lodge
4 Wednesday, July 18 th 8:00 9:00am Breakfast Sunrise, HV Lodge Session III, 2 nd Floor Holiday Valley Lodge 9:00am 4:15pm Session III: Leukodystrophy Care Network (LCN) 9:00 9:15am Welcome and Introduction Anna Grantham 9:15 10:15am Discussion of LCN Center Protocol for Patient Referrals Catherine Becker, NP Leukodystrophy Clinical Practice Guidelines (CPGs) Overview and Updates 10:15 10:45am Musculoskeletal Sally Evans, MD 10:45 11:15am Treatment Joanne Kurtzberg, MD 11:15 11:45am Neurology Florian Eichler, MD 11:45 12:00pm Respiratory Geovanny Perez, MD 12:00 12:15pm Diagnosis Maura Ruzhnikov, MD Group Photo 12:15pm 1:15pm LUNCH 1:15 2:45pm CPG Breakout Sessions Musculoskeletal Treatment Bunker, 2 nd Floor Neurology Moonshadow, 1 st Floor Respiratory Morning Star, 1 st Floor Diagnosis Birdie, 2 nd Floor 2:45 3:45pm CPG Breakout Group Updates CPG Lead Authors 3:45 4:15pm Group Discussion Florian Eichler, MD 4:30 6:00pm LCN Care Coordinator Workgroup Meeting Birdie HV Lodge 7pm Dinner Please join us as we celebrate 20 years of Hunter s Hope and meet our Leukodystrophy families. Sunrise, HV Lodge
5 Thursday, July 19 th 8:00am Breakfast Sunrise, HV Lodge Session IV, 2 nd Floor Holiday Valley Lodge 9:30 2:30pm Leukodystrophy Care Network (LCN) Presentations to Leukodystrophy Families 9:30 9:40am Welcome & LCN Overview Jacque Waggoner and Anna Grantham 9:40 9:55am MLD NBS Michael Gelb, PhD 9:55 10:10am Krabbe and ALD Newborn Screening (NBS) Joseph Orsini, PhD Overview 10:10 10:25am Krabbe NBS Clinical Practice Guidelines Jennifer Kwon, MD 10:25 10:40am Guidelines for ALD NBS Ali Fatemi, MD 10:40 10:55am LCN Centers Stephanie Keller, MD 10:55 11:10pm LCN Care Coordinators Tara West, NP 11:10 11:45pm Treatment Joanne Kurtzberg, MD 11:45 12:45pm LUNCH 12:45 1:45pm Clinical Practice Guidelines Musculoskeletal Treatment Neurology Respiratory CPG Lead Authors Diagnosis 1:45 2:15 Advancements in Leukodystrophies Amy Waldman, MD 2:15 2:30pm ALD Clinical Trial Florian Eichler, MD Save the Date! 2019 Hunter s Hope Medical Symposium July 22-25, 2019
2016 Medical Symposium. Leukodystrophies
2016 Medical Symposium Leukodystrophies Newborn Screening Research Leukodystrophy Care Network July 25-27, 2016 2016 Family Symposium LCN Centers Presentations July 28, 2016 Holiday Valley Resort Ellicottville,
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