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.

 

Open throughout the conference:

(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!

(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.

(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.

(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
“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
“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

Conference Sponsors

2024 Sponsors

Presenting

Anonymous

The Doyle Foundation

Sanofi

Courage

Aspa, a BridgeBio Company

Chris Chapman and William Ohle

Jessie’s Rally of Hope

Laura and Simeon Schindelman

Hope

Aaron’s Fund

Azafaros

Cameron and Hayden Lord Foundation*

Gerald Cox, MD, PhD*

Hamilton Company Charitable Foundation

The Manning Family, In Memory of Dylan Manning

NTSAD New York Area Fund

Inspiration

Amicus Therapeutics

Blu Genes Foundation

Emma’s Fund for Families

JCR Pharmaceuticals

Mathew Forbes Romer Foundation*

Families and Partners

B Brave Foundation*

Lauren Celano*

Stanley Cohen

Bonnie* and Barry Davis, In Loving Memory of Adam Davis

Monica and Gary Gettleman, In Memory of Brooke Chase Gettleman

Jaxson’s Train of Hope

Staci Kallish, DO*

NTSAD of Delaware Valley

Susan* and Alan Roden and Family

*NTSAD Board Member