The Family Conference Continues on Saturday, June 29.
Please be advised that this page is for SATURDAY, JUNE 29th Virtual links. All session times are in CENTRAL STANDARD TIME.
| CENTRAL STANDARD TIME | Red Oak Ballroom | ||||
| 08:30 – 08:45 AM |
Announcements |
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| CENTRAL STANDARD TIME |
Red Oak Ballroom | Bluestem | Hazelnut | Hollyhock | Iris |
| 09:00 – 10:00 AM |
Introducing: The ULF’s Ambassador Program Marla Chapleau and the ULF Ambassadors |
Treatment Modalities for Leukodystrophies Dr. Ali Fatemi, Johns Hopkins and Kennedy Krieger Institute |
Grief Roundtable LuAnn Swartzlander |
Krabbe Disease Presented by KrabbeConnect |
CADASIL Presented by Cure CADASIL |
| 10:15 – 11:15 AM |
Advancements in Gene Therapy Dr. Florian Eichler, Mass. General Hospital |
Anticipatory Grief Nicollette Vasquez, Lightways Joliet |
Spouses & Partners Roundtable Margaret Halter and Roger Locy |
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| 11:30 – 12:30 PM |
Bioethics: Understanding the Importance of Informed Consent Melody Kisor, Cure LBSL |
Utilizing Palliative Care and Hospice for Quality of Life Dr. Erin Flanagan, Lightways Joliet |
Research and the Ultra-Rare Dr. Paul Watkins, Kennedy Krieger Institute |
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| 12:30 – 01:30 PM | Lunch | ||||
| CENTRAL STANDARD TIME | Red Oak Ballroom |
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| 01:30 – 02:00 PM |
Scientific Symposium Session Summaries |
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| 02:00 – 04:00 PM |
Updates from our Industry Partners |
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| Room | Red Oak Ballroom | Bluestem |
Hazelnut | Hollyhock | Iris |
| 04:15 – 05:15 PM |
Exploring the Benefits of Hippotherapy, or Therapeutic Horseback Riding. |
Speech Therapy TopicsTempe Thomas, Vox Chicago |
Newborn Screening Crash Course – Get Involved in Your State! |
Affected Women Roundtable JoAnn Locy, Jamie Barlow, and LuAnn Swartzlander |
CADASIL Community Conversation (4 PM to 5:30 PM) |