Conference Agenda
Health Management Day
Saturday April 13, 2024
Below is the current schedule (subject to change) for the 46th Annual Family Conference held in Chicago, Illinois from Thursday, April 11, 2024 through April 14, 2024.
| Time | Session |
|---|---|
| 8:00am – 9:30am | Breakfast Ballrooms A-E |
| 8:30am – 12:00pm | Registration North Foyer |
| 8:45am – 5:00pm | Youth Retreat (Siblings ages 10-18 |
| 9:00am – 5:15pm | Camp Snuggle/Active for Affected Children Suites 901 and 910 Please make sure to pick up children promptly after sessions. |
| 9:00am – 5:15pm | Camp Sunshine (Siblings ages 0-9) Mallard Please make sure to pick up children promptly after sessions. |
| 9:15am – 11:45am | Health Management for Affected Children (Infantile, Juvenile and Canavan) Conference Dining Room The health management session will address the day-to-day care required after diagnosis and will include tips and tools to help mitigate the issues that arise in highly structured care. This session is intended for our families with living children but is open for outside participation. |
| 9:45am – 11:45am | Living with Loss Monarch This session will be an interactive discussion that focuses on the intricacies of our lives as bereaved parents. This is a closed session for bereaved infantile/juvenile parents. |
| 9:45am – 11:45am | Late Onset: Movement and Mobility Cardinal Stay tuned for more information. |
| 9:45am – 11:45am | Grandparent/Extended Family Group Heron A time to discuss the special and unique role extended family members play as part of the family unit, and the ways to support their loved ones through the challenges of a rare diagnosis. |
| 10:00am – 12:00pm | Family Lounge Medinah |
| 12:00pm – 1:15pm | Awards Luncheon Ballrooms A-E |
| 1:30pm – 3:30pm | Men’s and Women’s Support Groups Men’s: Monarch Women’s: Conference Dining Room These individual sessions are designed specifically for parents of affected children. This is a place to discuss the roles we take on in our lives in relation to our affected children. These sessions are closed and restricted just to parents of affected children, both currently caring for a child, and those who are bereaved. |
| 1:30pm – 3:30pm | Late Onset: Q&A with the Experts Cardinal Stay tuned for more information. For Late Onset adults only. |
| 1:30pm – 3:30pm | Late Onset Caregiver Group Heron This session is specifically designed for the parents, spouses, and companions of our Late Onset members to gather and discuss how it impacts their own relationships. This session is closed for our late onset caregivers only. |
| 4:00pm – 5:00pm | Parent Peer Group (PPG) Wrap Up Conference Dining Room Our Final conference session is our second Parent Peer Group which will be relationship focused. This session is closed and restricted just to parents of affected children, both currently caring for their children, and those who are bereaved. |
| 5:30pm – 7:00pm | Celebration Dinner Ballrooms A-E A special evening to enjoy each other’s company, take photos, dance and be thankful for this rare and mighty community. |
“The support and guidance we received in the meetings was invaluable in helping us to stay on our feet, band together as a family and to continue to support her brother. There was so much comfort in knowing we were with other parents who completely understand the way we are feeling.”
“For our family attending the conference is like coming ‘home’ to a family that understand and where you don’t have to explain yourself…you just get unconditional love and acceptance.”
“Attending conference changed everything for me. It’s an incredible feeling to bond with other families who understand what you are going through and are willing to hold your hand through it all….. it’s hard to sum it up. The conference truly changed my life!”
Conference Sponsors
2025 Sponsors
Presenting
Courage
Hope
Inspiration
Families and Partners
*NTSAD Board Member