Program
The Program is subject to change up until the Symposium begins.
| Start | Finish | Topic/Event | Speaker | Location |
|---|---|---|---|---|
| Wednesday July 16th | ||||
| All Day | Holiday Valley Resort checkin | Pick up your Welcome Gifts in the Lobby. | Lobby | |
| All Day | Photography Studio - Brody Wheeler | Sign up in dining room. | Moonshadow, 1st Fl HV Lodge | |
| 6:00 PM | Family Welcome Dinner | Everyone! | Sunrise, 1st Fl HV Lodge | |
| Thursday July 17th | ||||
| 8:00 AM - 8:00 PM | Prayer Room | Everyone Welcome! | Birdie, 2nd Fl HV Lodge | |
| All Day | Photography Studio - Brody Wheeler | Sign up in dining room. | Moonshadow, 1st Fl HV Lodge | |
| All Day | Sensory Room | The Sensory Sisters - Kristen Malfara, Deborah Hecker, Jennifer Fitzgerald | Explorer, 1st Fl HV Lodge | |
| 8:00 AM | 9:30 AM | Breakfast | Sunrise, 1st Fl HV Lodge | |
| 8:45 AM | Kid Kamp Opens | Sign in at Creekside | Creekside | |
| 8:50 AM | 9:20 AM | Prayer Party | Drake & Christina Levasheff | Birdie, 2nd Fl HV Lodge |
| 9:30 AM | 9:35 AM | Welcome | Jacque Waggoner | Fairway, 2nd Fl HV Lodge |
| 9:35 AM | 9:45 AM | LCN Overview | Anna Grantham | Fairway, 2nd Fl HV Lodge |
| 9:45 AM | 10:00 AM | Overview of Medical Symposium | Dr. Robert Thompson Stone | Fairway, 2nd Fl HV Lodge |
| 10:05 AM | 10:20 AM | Krabbe NBS Council | Dr. Joanne Kurtzberg | Fairway, 2nd Fl HV Lodge |
| 10:20 AM | 10:40 AM | Treatment for Krabbe Disease | Dr. Joanne Kurtzberg | Fairway, 2nd Fl HV Lodge |
| 10:40 AM | 10:55AM | NBS for MLD and CTX | Dr. Michael Gelb | Fairway, 2nd Fl HV Lodge |
| 10:55 AM | 11:15 AM | ALD Gene Therapy | Dr. Christine Duncan | Fairway, 2nd Fl HV Lodge |
| 11:15 AM | 12:00 PM | Clinical Trials and New Treatments for LDs | Industry Partner Panel Moderator: Drake Levasheff | Fairway, 2nd Fl HV Lodge |
| Orchard Therapeutics | Annamarie Dillon | |||
| Minoryx Therapeutics | Dr. Arun Mistry | |||
| Ionis Pharmaceuticals | Rob Goldstein-Mahon | |||
| Mirum Pharmaceuticals | Mara Peters | |||
| 12:00 PM | Kid Kamp Closes for lunch | Parents pick up kids | Creekside | |
| 12:00 PM | 1:00 PM | Lunch | Sunrise, 1st Floor HV Lodge | |
| 1:00 PM | Kid Kamp Opens | Sign in at Creekside | Creekside | |
| 1:00 PM | 3:00 PM | Sibling Challenge | For Siblings (12 yrs +) | HV Clocktower |
| 1:10 PM | 1:30 PM | Genetic Testing for Family Members | Amy White | Fairway, 2nd Fl HV Lodge |
| 1:30 PM | 1:50 PM | LCN Multidisciplinary Care | Catie Becker | Fairway, 2nd Fl HV Lodge |
| 1:50 PM | 2:05PM | Educating Medical Providers about LDs | Beth Brooks | Fairway, 2nd Fl HV Lodge |
| 2:05 PM | 2:20 PM | BREAK | ||
| 2:20 PM | 2:40 PM | Multi-Sensory Wonderland | The Sensory Sisters - Kristen Malfara & Jennifer Fitzgerald | Fairway, 2nd Fl HV Lodge |
| 4:30 PM | Kid Kamp Closes | Parents pick up kids | Creekside | |
| 5:00 PM | Group Photos | Please wear your Symposium t-shirts | HV Clocktower | |
| 5:45 PM | Dinner | Sunrise, 1st Floor HV Lodge | ||
| 6:00 PM | Raffle | Scott and Terry Hammonds | Sunrise, 1st Floor HV Lodge | |
| 6:45 PM | Sibling Collection Fashion Show | Siblings, please wear your Sibling Collection Shirts and be prepared to tell your story and what your design represents. | Sunrise, 1st Floor HV Lodge | |
| Friday July 18th | ||||
| 8:00 AM - 8:00 PM | Prayer Room | Everyone Welcome! | Birdie, 2nd Fl HV Lodge | |
| All Day | Photography Studio - Brody Wheeler | Sign up in dining room. | Moonshadow, 1st Fl HV Lodge | |
| All Day | Sensory Room | The Sensory Sisters - Kristen Malfara, Deborah Hecker, Jennifer Fitzgerald | Explorer, 1st Fl HV Lodge | |
| 8:00 AM | 9:30 | Breakfast | Sunrise, 1st Floor HV Lodge | |
| 8:45 AM | Kid Kamp Opens | Sign in at Creekside | Creekside | |
| 8:50 AM | 9:20 | Prayer Party | Drake & Christina Levasheff | Birdie, 2nd Fl HV Lodge |
| 9:30 AM | 10:00 | The Power of Inclusive Dance | Hannea Milliman | Fairway, 2nd Fl HV Lodge |
| 10:00 AM | 10:45 | Favorite Things | Families | Fairway, 2nd Fl HV Lodge |
| 10:45 AM | 11:50 | The Blessing of Our Stories: Families Sharing from the Heart | Families | Fairway, 2nd Fl HV Lodge |
| 11:50 PM | Kid Kamp Closes for lunch | Parents pick up kids | Creekside | |
| 12:00 PM | 1:30 | Lunch | Sunrise, 1st Fl HV Lodge | |
| 1:15 PM | Kid Kamp Opens | Sign in at Creekside | Creekside | |
| 1:30 PM | 4:00 | Breakout Sessions | ||
| Men's Session | Moderated by Mel Sereno | Moonshadow, 1st Fl HV Lodge | ||
| Women's Session | Moderated by Christina Levasheff | Birdie, 2nd Fl HV Lodge | ||
| Sibling's Session (12 years and up) | Moderated by Wyatt Abner | Bunker, 2nd Fl HV Lodge | ||
| 4:00 PM | Kid Kamp Closes | Parents pick up kids | Creekside | |
| 4:00 PM | 5:00 PM | Sibling Challenge | For Siblings (12 yrs +) | HV Clocktower |
| 5:00 PM | Balloon Release & Family Symposium Walk | Siblings, please wear your Sibling Collection Shirts. | Overlook Terrace | |
| 6:00 PM | Dinner | Sunrise, 1st Fl HV Lodge | ||
| 6:00 PM | Raffle | Scott and Terry Hammonds | Sunrise, 1st Fl HV Lodge | |
| Saturday, July 19th | ||||
| 8:00 AM - 8:00 PM | Prayer Room | Everyone Welcome! | Birdie, 2nd Fl HV Lodge | |
| All Day | Photography Studio - Brody Wheeler | Sign up sheet available in dining room. | Moonshadow, 1st Fl HV Lodge | |
| All Day | Sensory Room | The Sensory Sisters - Kristen Malfara, Deborah Hecker, Jennifer Fitzgerald | Explorer, 1st Fl HV Lodge | |
| 8:30 AM | 10:30 AM | Breakfast | Sunrise, 1st Fl HV Lodge | |
| 9:00 AM | 12:30 PM | Sky High Adventure Park | Siblings - Age 12 and up | Adventure Park |
| 10:00 AM | 5:00 PM | All Day - Free Time | Shuttle schedule and pickup/drop-off for Ellicottville downtown is located in the Lobby. | Holiday Valley Resort Lobby |
| Lunch on Your Own | Wherever you like! | |||
| 3:00 PM | 5:00 PM | Sibling Challenge| Championship | All are welcome to watch! | HV Clocktower |
| 5:00 PM | Dinner | Sunrise, 1st Fl HV Lodge | ||
| 6:00 PM | Raffle | Scott and Terry Hammonds | Sunrise, 1st Fl HV Lodge | |
| 6:30 PM | Talent Show | Everyone! | Sunrise, 1st Fl HV Lodge | |
| Sunday, July 21st | ||||
| 7:00 AM | 10:00 | Breakfast to go | Snowridge, Tamarack |