Conference Agenda

Research Day

Friday April 12, 2024

Below is the current schedule (subject to change) for the 46th Annual Family Conference held in Chicago, Illinois from Thursday, April 11 through Sunday, April 14, 2024.

Time	Session
7:45am – 8:45am	Breakfast Ballrooms A-E
8:30am – 5:30pm	Registration North Foyer
8:45am – 5:30pm	Camp Snuggle/Active for Affected Children Suites 901 and 910 Please make sure to pick up children promptly after sessions.
8:30am – 5:30pm	Camp Sunshine (Siblings ages 0-9) Mallard Please make sure to pick up children promptly after sessions.
8:45am – 4:00pm	Youth Retreat (Siblings ages 10-18) Location: Check in at registration.
9:00am – 10:00am	Research Kick-Off Monarch
10:00am – 11:30am	Ask the Industry Expert Monarch Join a panel of industry representatives for a Q&A session during which they will explore their perspectives and the current climate surrounding research and drug developments for Tay-Sachs, Canavan, GM1 gangliosidosis, and Sandhoff diseases. This session is open to all attendees.
10:00am – 12:00pm	Family Lounge Medinah
11:45am – 12:45pm	Research Luncheon Ballrooms A-E
1:00 pm-3:00 pm	Disease Specific Breakout Sessions (afternoon) Canavan Research Breakout Ballrooms I-J Meet and listen to updates from companies and researchers working on therapies for Canavan. GM1 and GM2 Infantile and Juvenile Research Breakout Monarch Meet and listen to updates from companies and researchers working on therapies for the infantile and juvenile onsets of GM1 and GM2 gangliosidosis. Late Onset Research Breakout Ballrooms G-H Meet and listen to updates from companies and researchers working on therapies for Late Onset.
3:15pm – 4:00pm	Outdoor Walkabout Join us outside as we walk along the golf path surrounding the hotel to get in a bit of movement and refresh a bit after an informative day.
4:00pm – 4:30pm	Quiet Reflection Monarch A time for families to display treasured mementos of loved ones who have passed in the Commemoration Ceremony room, to pay respect and grieve together as they view the mementos of other families. The Commemoration Ceremony will immediately follow the time of Quiet Reflection. This session is open to all attendees.
4:30pm – 5:30pm	Commemoration Monarch We hold this Commemoration Ceremony as a way to pay respects to our loved ones who have left us too soon. A candle will be lit for all bereaved families in attendance while a slide show of pictures plays as their loved ones’ names are read aloud. While this session is open to all attendees, we understand the sensitive nature of this ceremony and attendance is never required.
6:00pm – 7:00pm	Research Reception East Foyer We end Research Day with a time to mix and mingle, enjoy heavy appetizers and drinks in this informal cocktail style setting. There is no formal meal allowing attendees to enjoy the greater Chicago area.

Open throughout the conference:

Camp Snuggle and Camp Active

(Available Thursday, Friday, Saturday during the day; closed during meals)

These camps are staffed with a highly skilled team of trained nurses and dedicated volunteers, many of whom are parents of affected children, who can care for the affected children during conference session times allowing parents to attend sessions worry-free, if they so choose.

Camp Snuggle is a serene place designed to quietly support the needs of affected infantile children who benefit from less sound and movement.

Camp Active may appeal more to our juvenile and Canavan families in that is provides an atmosphere of excitement and engagement with sounds, games, and a higher level of stimulation.

We need you!

Come spend a little time with our amazing kids and volunteers up in Camp Snuggle and Camp Active. You will find us playing, reading, painting and more in Camp Active.

In Camp Snuggle, spend some time snuggling our kiddos, relaxing and helping with keepsake artwork. We would love to have you at any time during the conference. Please take a look at the schedule of events before signing up, to be sure you make it to all your chosen sessions. Thank you and see you in Camp!

Camp Sunshine

(Available Thursday, Friday, Saturday during the day; closed during meals)

The dynamic Camp Sunshine program is a conference favorite among our healthy siblings, ages 0-9. While mom and dad attend sessions, siblings get to attend their own camp where they will play together, and spend time creating crafts, playing games, and having fun with our trained staff of conference childcare providers, all in a secure environment right inside the hotel.

Youth Group

(Available Thursday, Friday, Saturday)

Healthy siblings — from 10 years to high school seniors — come together with peers who understand what it’s like to have a sibling with a rare disease. Thursday is a day-long program, which includes a Youth Peer Group (YPG) session (just like the PPG sessions the parents attend), and other support-based activities. The Youth Group will enjoy two outings during the conference: one on Friday and one on Saturday. During the outings, the Youth Group will see the sights around the greater Chicago area accompanied by Youth Advisors and our very own Dad Chaperones.

Family Lounge

(Available Thursday, Friday & Saturday)

The NTSAD Family Lounge is a place to rest, relax, and get to know one another. We understand attending sessions can be overwhelming and emotional. We encourage you to check into the Family Lounge often to grab a snack or drink, and chat with your fellow attendees between sessions and in the evening. The Family Lounge is open to all attendees from morning to midnight.

“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.”

Anonymous, Support Family

“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.”

Mary Jones, Mother of Tay-Sachs Child

“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!”

Bradley Martins, Sandhoff Family