2018 Family Conference Schedule

Register Now: Family Conference: June 23 and June 24, 2018

Adult, Member $100 | Adult, Non-Member $150 | Teen (ages 13 – 18) $50 | Children (up to age 12) Free

Date/TimePresentersTopic/Event
FRIDAY, JUNE 22
4:30 pmConference Check-In Opens
6:30 pmBob Rauner
Keely Haag
Tatum Glas
Welcome Reception & Bingo
6:30 - 8:30 pm
Complimentary beer, wine, soda and water

6:30 pm
Hors d'oeuvres

7:30 pm
Dinner
Disease-Specific Discussion Panels between Families

SATURDAY, JUNE 23
7:00 - 8:15 amBreakfast
8:15 - 8:30 amBob Rauner
Keely Haag
Tatum Glas
Welcome & Announcements
8:30 - 8:45 amRetrophin Presentation
8:45 - 10:15 amMSABMSAB and Industry Panel
.. Clinical Trials
.. Bone Marrow Transplants/Gene Therapy
.. Emerging Therapies
10:15 - 10:30 amBreak with Auction Preview
10:30 - 11:30 amDeborah Renaud, MDOverview of Leukodystrophies
11:30 am - 12:30 pmAdeline Vanderver, MDGenome Sequencing/Diagnosing Unknown
12:30 - 1:30 pmChris Kaag, I'm Able FoundationLunch with Keynote Speaker
1:30 - 2:30 pmAnn Moser, Elisa Seeger and Jennifer TaylorNewborn Screening & Awareness Advocacy
2:30 - 3:30 pmAnna Grantham, Hunter’s Hope and LCN Panel with MSAB MembersLeukodystrophy Care Network Panel with MSAB Members
3:30 - 3:45 pmBreak and Auction Preview
3:45 - 6:15 pmDisease-specific Panels:
ALD/AMN, VWM, CTX, MLD, Undiagnosed
6:15 - 6:30 pmShire Presentation
6:30 - 7:30 pmDinner and Service Award
7:30 - 9:00 pmInformal Discussions: AMN Men, AMN Women, H-ABC, Undiagnosed, VWM
SUNDAY, JUNE 24
7:00 - 8:15 amBreakfast
8:15 - 5:00 pmScientific Meeting (medical professionals only)
8:15 - 8:30 amBob Rauner
Keely Haag
Tatum Glas
Welcome & Announcements
8:30 - 9:15 amPaul Watkins, MD, PhDBiochemistry of ALD/AMN
9:15 - 10:00 amSharon Bergfeld, MASE, LBSI, LBSIIBreakout: Student with Disability/Schooling Advocacy
Colleen KintnerBreakout: Grief Counseling
Anna Laurie Hicks, MDBreakout: Hospice
10:00 - 10:30 amBreak with Auction Preview
10:30 - 11:30 amCamille CorreAdaptive Equipment, Technology, Rehab and Adaptive Recreation
11:30 am - 12:30 pmJennifer Keller and Kathy ZackowskiBreakout: Exercising with Limited Mobility
Bernice CasellaBreakout: Seizure Management
Ryan Platt and Andrew SpaffordBreakout: Disability, Social Security, Life Planning
12:30 - 1:30 pmLunch
1:30 - 2:00 pm Keely Haag and Tatum GlasAmbassador and Team Fundraising
2:00 - 3:00 pmJulie Cohen, ScM, CGCBreakout: Family Planning and Genetic Counseling
Hong Brereton, RDN, MSBreakout: Diet/Healthy Eating with Leukodystrophy
3:00 - 3:30 pmMemorial Service
3:30 - 4:00 pmBreak with Auction Preview
4:00 - 6:15 pmInformal Group and Follow Up Discussions for Families and Doctors
6:15 - 6:30 pm Leadiant Presentation
6:30 - 9:00 pmCocktails, Auctions, Dinner, and Entertainment