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

This schedule is tentative and will likely change slightly before June 22, 2018.

Date/TimePresentersTopic/Event
FRIDAY, JUNE 22
4:30 pmConference Check-In Opens
6:30 pmBob Rauner
Keely Haag
Tatum Glas
Welcome Reception & Fundraising Acknowledgement
6:30 - 7:30 pmDisease-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 amCarolina Donor Presentation
8:45 - 10:15 amMSABMSAB and Industry Panel
.. Clinical Trials
.. Bone Marrow Transplants/Gene Therapy
.. Emerging Therapies
10:15 - 10:30 amBreak with Exhibitors/Auction Preview
10:30 - 11:30 amDeborah RenaudOverview of Leukodystrophies
11:30 am - 12:30 pmAdeline VanderverGenome Sequencing/Diagnosing Unknown
12:30 - 1:30 pmLunch with Keynote Speaker
1:30 - 2:30 pmAnn MoserNewborn Screening & Awareness Advocacy
2:30 - 3:30 pmMSABLeukodystrophy Care Network Panel with MSAB Members
3:30 - 3:45 pmBreak with Exhibitors/Auction Preview
3:45 - 4:30 pmDisease-specific Panel Breakout Sessions: ALD/AMN, VWM, CTX, MLD, H-ABC, AGS, MLC, 4H, Krabbe
4:30 - 5:00 pmBreak with Exhibitors (if group wishes or can continue with session)
5:00 - 6:15 pmDisease-specific Panel Breakout Sessions: ALD/AMN, VWM, CTX, MLD, H-ABC, AGS, MLC, 4H, Krabbe
6:15 - 6:30 pmRaleigh Donor Presentation
6:30 - 7:30 pmDinner
7:30 - 9:00 pmInformal Discussions: AMN Men, AMN Women, 4H, 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 WatkinsBiochemistry of ALD/AMN
9:15 - 10:00 amSharon BergfeldBreakout: Student with Disability/Schooling Advocacy, Grief Counseling, Urology/Endocrinology, Hospice
TBDBreakout: Grief Counseling
TBDBreakout: Urology/Endocrinology
TBDBreakout: Hospice
10:00 - 10:30 amBreak with Exhibitors/Auction Preview
10:30 - 11:30 amTBDTBD
11:30 am - 12:30 pmJennifer Keller/Kathy ZackowskiBreakout: Exercising with Limited Mobility; Augmentative and Alternative Communication; Family Planning/Genetic Counseling; Disability, Social Security and Life Planning
TBDBreakout: Augmentative and Alternative Communication
TBDBreakout: Family Planning/Genetic Counseling
TBDBreakout: Disability, Social Security and Life Planning
12:30 - 1:30 pmLunch
1:30 - 2:00 pm Keely Haag
Tatum Glas
Team Fundraising/Kits
2:00 - 3:15 pmTeen Panel
3:15 -4:15 pmNC VendorBreakout: Medical Equipment
Hong BreretonBreakout: Diet/Healthy Eating with Leukodystrophy
KKI PsychologistBreakout: Managing Behavioral Concerns
TBDBreakout: Pain and Symptom Management
4:15 - 4:45 pmMemorial Service and Break with Exhibitors
5:00 - 6:30 pmInformal Group Discussions for Families and DoctorsCaregivers Support Session
Informal Group Discussions for Families and DoctorsFollow-ups from Exercising with Limited Mobility
Informal Group Discussions for Families and DoctorsFollow-ups from Diet/Healthy Eating
Informal Group Discussions for Families and DoctorsFollow-ups from Pain and Symptom Management
Informal Group Discussions for Families and DoctorsFollow-ups from Disability, Social Security, and Life Planning
Informal Group Discussions for Families and DoctorsFollow-ups from Urology/Endocrinology
6:30 - 9:00 pmCocktails, Auctions, Dinner, and Entertainment
MONDAY, JUNE 25
7:00 - 8:15 amBreakfast
8:15 am - NoonScience Meeting
NoonLunch