2026 Hunter's Hope Symposium
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Tuesday, July 14th
Start
Time		Stop
Time		Topic/EventSpeakerPresentation Link
7:00 AM7:50 AMBreakfast
8:00 AM 8:10 AMWelcome and IntroductionDr. Robert Thompson Stone and Anna Grantham
Session One: Leukodystrophy Newborn Screening Updates and Discussion
8:10 AM8:40 AMUpdates in NBS for ALD, KD, MLD and CTX in U.S.State LabsDr. Joseph OrsiniView Presentation
8:40 AM9:10 AMThe Evolving Story of Mildly Elevated Psychosine in NBSDr. Dieter MaternView Presentation
9:10 AM9:20 AMGenoKrabbe DatabaseDr. Robert Thompson StoneComing Soon
9:20 AM10:20 AMPanel Discussion: Newborn Screening for Krabbe DiseaseDr. Joanne Kurtzberg (moderator), Dr. Joseph Orsini, Dr. Dieter Matern, Patricia Hunt, Zachery Leeker, Dr. Robert Thompson StoneView Presentation
10:20 AM10:35 AMBREAK
10:35 AM11:00 AMFollow-up Protocol for Positive MLD NBSDr. Laura AdangView Presentation
11:00 AM11:50 AMPanel Discussion: Cases in KD, MLD, and ALD NBSDr. Laura Adang, Dr. Florian Eichler, Dr. Margie ReamView Presentation
11:50 AM12:00 PMFamily PerspectiveAudet Family, Krabbe NBSView Presentation
12:00 PM1:00 PMLUNCH
1:00 PM1:10 PMFamily PerspectiveSereno Family, MLDView Presentation
1:10 PM1:25 PMKrabbe Disease: Genotype-Phenotype CorrelationsAmy WhiteView Presentation
1:25 PM1:40PMMetachromatic Leukodystrophy: Genotype-Phenotype Correlations Yuexuan Liu View Presentation
1:40 PM1:55 PMResults of a Delphi Study on Cerebrotendinous Xanthomatosis NBS GuidelinesDr. Andrea DeBarberView Presentation
1:55 PM2:05 PMQ & A SpeakersWhite, Gelb, DeBarber
Session Two: Therapeutics in KD, ALD, MLD, and CTX
2:05 PM2:20 PMUpdates in KD Preclinical TrialsDr. Steven GrayView Presentation
2:20 PM2:40PMUpdates in KD Clinical Trials and Gene TherapyDr. Joanne KurtzbergView Presentation
2:40 PM2:55 PMUpdate in AAV9 Clinical Trial for KDDr. Florian EichlerView Presentation
2:55 PM3:05 PMBREAK
3:05 PM3:20 PMUpdates in Treatment of MLD with LenmeldyDr. Paul OrchardView Presentation
3:20 PM3:50 PMUpdates in ALD TherapeuticsDr. Christine Duncan, Dr. Ali Fatemi, Dr. Florian EichlerView Presentation
3:50 PM4:05 PMCDCA in Pediatric CTXDr. Florian EichlerView Presentation
4:05 PM4:50 PMPanel Discussion: Q&A on therapeutics for MLD, ALD, KD and CTXModerator: Dr. Rafael GalindoView Presentation
4:50 PMGroup Photo
6:00 PMDINNER
Wednesday, July 15th8AM - 5PM ET
Time
7:00AM8:00 AMBREAKFAST
Session Three: Therapeutics in Canavan, Alexander Disease, Pelizaeus-Merzbacher Disease, Aicardi-Goutieres, and Vanishing White Matter Disease
8:00 AM8:15 AMGene Therapy for Canavan DiseaseDr. Amanda NagyView Presentation
8:15 AM8:45 AMAnti-Sense Therapy for Alexander and Pelizaeus-Merzbacher DiseaseDr. Stephanie KellerView Presentation
8:45 AM9:00 AMTherapeutics in Aicardi-GoutieresDr. Laura AdangView Presentation
9:00 AM9:15 AMTherapeutics in Vanishing White Matter DiseaseDr. Florian EichlerView Presentation
9:15 AM9:45 AMPanel Discussion: Q&A on therapeutics for Canavan, Alexander, PMD, AGS and VWMModerator: Dr. Margie ReamView Presentation
9:45 AM9:55 AMFamily PerspectiveKristen Malfara, Aicardi-GoutieresView Presentation
9:55 AM10:10 AMBREAK
10:10 AM10:35 AMRapid Approvals and Compassionate Use ProgramsDr. Joshua BonkowskyView Presentation
Session Four: Optimizing Health and Integration of Care
10:35 AM10:50 AMAdult-Onset Leukodystrophies: Krabbe Disease and the Broader SpectrumDr. Yedda Li View Presentation
10:50 AM11:05 AMAdult leukodystrophy standards of care and clinical trial considerationsDr. Jennifer Orthmann-MurphyView Presentation
11:05 AM11:20 AMTransition of CareCatie BeckerView Presentation
11:20 AM11:35 AMIncorporating Palliative CareDr. Jennifer RubinView Presentation
11:35 AM12:00 PMPanel Discussion: Optimizing Health and Integration of Care Moderator: Dr. Ali FatemiView Presentation
12: 00 PM1:00 PMLUNCH
1:05 PM1:30 PMOptimizing Musculoskeletal Health: Technologies, Medications, and TherapiesDr. Sally EvansView Presentation
1:30 PM2:35 PMLCN Workgroups
Krabbe NBS Working Session: Data Review and Category Refinement for Infants with Intermediate PSY LevelsDr. Joanne Kurtzberg & Dr. Margie Ream
LCN Working Session: Transition of Care for Individuals with LeukodystrophiesCatie Becker & Dr. Yedda Li
2:35 PM2: 55 PMReports from Groups
2:55 PM3:00 PMClosing RemarksDr. Robert Stone and Anna Grantham
3:00 PMMedical Meeting Ends
3:05 PM5:40 PMKD NBS Workgroup MeetingBirdie, 2nd Fl HV Lodge
6:00PMFamily Welcome DinnerAll our welcome to attendSunrise, 1st Floor HV Lodge