2020 LBSL Conference: “Connection, Collaboration, Cures”

Agenda

  Go
  • Closed  Closed
  • Optional  Optional
  • 11/13/20
  •  
    6:00 PM  -  8:00 PM
    Welcome Social
    Residence Inn by Marriott Baltimore at The Johns Hopkins Medical Campus
    Join us for refreshments and a chance to speak with other families.
     Optional 
  • 11/14/20
  •  
    8:00 AM  -  8:30 AM
    Child Care Drop Off
    Residence Inn by Marriott Baltimore at The Johns Hopkins Medical Campus
    3rd floor Kennedy Krieger Conference Room
     Optional  Closed 
    8:30 AM  -  9:00 AM
    Check-in and Breakfast
    Arnold J. Capute, MD MPH Conference Center
    9:00 AM  -  9:30 AM
    Welcome and Introductions
    Arnold J. Capute, MD MPH Conference Center
    9:30 AM  -  10:30 AM
    LBSL Natural History Study
    Arnold J. Capute, MD MPH Conference Center
    An update of two years of tracking patient changes using virtual assessments.
    10:30 AM  -  10:50 AM
    Understanding Mitochondria and Mitochondrial Disease: Putting DARS2 in Perspective
    Arnold J. Capute, MD MPH Conference Center
    10:50 AM  -  12:00 PM
    Mito Panel: Discussion on Mitochondrial Cocktail & The Clinical Experience
    Arnold J. Capute, MD MPH Conference Center
    Discussion led by Dr. Abdenur.
    11:45 AM  -  12:00 PM
    Morning Recap
    Arnold J. Capute, MD MPH Conference Center
    Question and Answers
    12:00 PM  -  1:30 PM
    Lunch and Networking
    Arnold J. Capute, MD MPH Conference Center
    1:30 PM  -  2:00 PM
    Fundraising for a Cure
    Arnold J. Capute, MD MPH Conference Center
    How to Move the LBSL Cure Effort Forward
    2:00 PM  -  2:30 PM
    How to Talk to Your Child & Loved Ones About a Diagnosis
    Arnold J. Capute, MD MPH Conference Center
    Speakers:
    2:30 PM  -  3:00 PM
    Behavioral Changes and Tips for School
    Arnold J. Capute, MD MPH Conference Center
    Speakers:
    3:00 PM  -  3:30 PM
    Advocating for Yourself or Your Child
    Arnold J. Capute, MD MPH Conference Center
    Speakers:
    3:30 PM  -  5:00 PM
    Physical Therapy for LBSL Patients
    Arnold J. Capute, MD MPH Conference Center
    Overview & Demonstration
    Speakers:
    5:00 PM  -  5:30 PM
    Child Care Pick Up
    Residence Inn by Marriott Baltimore at The Johns Hopkins Medical Campus
    3rd floor Kennedy Krieger Conference Room
     Optional  Closed 
  • 11/15/20
  •  
    8:00 AM  -  8:30 AM
    Child Care Drop Off
    Residence Inn by Marriott Baltimore at The Johns Hopkins Medical Campus
    3rd floor Kennedy Krieger Conference Room
     Optional  Closed 
    8:30 AM  -  9:00 AM
    Breakfast
    Arnold J. Capute, MD MPH Conference Center
    9:00 AM  -  9:15 AM
    Overview of Lab Research Advances in Leukodystrophies
    Arnold J. Capute, MD MPH Conference Center
    Speakers:
    9:15 AM  -  10:00 AM
    Protein Biology of LBSL
    Arnold J. Capute, MD MPH Conference Center
    Understanding Protein Folding and Function, with Special Emphasis on Proteins and Disease
    Speakers:
    10:00 AM  -  11:00 AM
    Lab Research Update
    Arnold J. Capute, MD MPH Conference Center
    An Overview of Recent Progress, Current Work, and Future Goals
    11:00 AM  -  11:45 PM
    Gene Therapy for Leukodystrophies
    Arnold J. Capute, MD MPH Conference Center
    A Look at Where the Science Stands
    Speakers:
    12:00 PM  -  1:00 PM
    Lunch
    Arnold J. Capute, MD MPH Conference Center
    12:30 PM  -  1:00 PM
    Child Care Pick Up
    Residence Inn by Marriott Baltimore at The Johns Hopkins Medical Campus
    3rd floor Kennedy Krieger Conference Room
     Optional  Closed 
    1:00 PM  -  1:45 PM
    Guided Lab Tours - A
    707 North Broadway
    Please only sign up for one tour time. Need to be 16 years old or older to participate.
     Optional  Closed 
    1:00 PM  -  4:00 PM
    Scheduled Clinic Visit
    707 N Broadway and 801 N Broadway
    Scheduled clinical visits, research MRI, and natural history study participation. Please contact Connor Murray at MurrayC@kennedykrieger.org to schedule an appointment. Interpreter will be provided for appointments if needed. The 1741 Conference Center will be open all day to mingle with attendees and staff.
     Optional  Closed 
    2:00 PM  -  2:45 PM
    Guided Lab Tours - B
    707 North Broadway
    Please only sign up for one tour time. Need to be 16 years old or older to participate.
     Optional  Closed 
    3:00 PM  -  4:00 PM
    Guided Lab Tours - C
    707 North Broadway
    Please only sign up for one tour time. Need to be 16 years old or older to participate.
     Optional  Closed 
    4:00 PM  -  5:00 PM
    “A Cure for Ellie” Round Table
    Residence Inn by Marriott Baltimore at The Johns Hopkins Medical Campus
    Patient/Family-Only Discussion of the LBSL Community’s Needs & Priorities. Learn and share tips for managing LBSL. Appetizers, soft drinks and water will be provided.
    Speakers:
     Optional 
  • 11/16/20
  •  
    8:00 AM  -  5:00 PM
    Scheduled Clinic Visit
    707 N Broadway and 801 N Broadway
    Scheduled clinical visits, research MRI, and natural history study participation. Please contact Connor Murray at MurrayC@kennedykrieger.org to schedule an appointment. Interpreter will be provided for appointments if needed. The 801 N Broadway 202 Conference Room will be available between appointments to mingle with other attendees and staff.
     Optional  Closed 
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