Conference Agenda

Health Management Day

Saturday June 3, 2023

Below is the schedule for the 45th Annual Family Conference held in Reston, Virginia from Thursday, June 1 through Sunday, June 4, 2023.

Time Session
8:00am – 9:30am Breakfast
Location: Grand Ballroom D and Corridor 2
8:30am – 12:00pm Registration
Location: Registration Room 
8:45am – 5:00pm Youth Retreat (Siblings ages 10-18)
Location: Check in at registration. Smithsonian National Air and Space Museum and lunch.  (wear your Youth Group t-shirt)
9:00am – 3:45pm Camp Snuggle/Active for Affected Children 
Location: Suites 1&2
Please make sure to pick up children promptly after sessions.
9:00am – 3:45pm Camp Sunshine (Siblings ages 0-9)
Location: Reston Suites ABC
Please make sure to pick up children promptly after sessions.
9:15am – 11:45am Health Management for Affected Children (Infantile, Juvenile and Canavan)
Location: Grand Ballroom AB
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
Location: Grand Ballroom C
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
Location: Grand Ballroom E
Stay tuned for more information.
9:45am – 11:45am Grandparent/Extended Family Group
Location: Grand Ballroom FG
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
Location: Lake Anne
12:00pm – 1:15pm Awards Luncheon
Location: Grand Ballroom D and Corridor 2
1:30pm – 3:00pm Men’s and Women’s Support Groups
Location: Grand Ballrooms AB & FG
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 – 3:00pm Late Onset: Q&A with the Experts
Location: Grand Ballroom E
Stay tuned for more information. For Late Onset adults only.
1:30pm – 3:00pm Late Onset Caregiver Group
Location: Grand Ballroom C
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.
5:30pm – 7:00pm Until Next Year Dinner
Location: Grand Ballroom D and Corridor 2
A special evening to enjoy each other’s company, take photos, dance and be thankful for this rare and mighty community.
Column 1 Value 16 Column 2 Value 16

 

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 Washington, DC area accompanied by Youth Advisors and our very own Dad Chaperones.

(Available 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

Conference Sponsors

Presenting

Believe

  • Laura and Simeon Schindelman

Courage

Hope

Inspiration

Families and Partners

  • Lauren Celano*
  • Codexis
  • Bonnie* and Barry Davis in Memory of Adam
  • Staci Kallish* and Chris Beer

*NTSAD Board Member