Conference Agenda

Research Day

Friday June 2, 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
7:45am – 8:45am Breakfast
Location: Grand Ballroom D and Corridor 2
8:30am – 5:30pm Registration
Location: Registration Room
8:45am – 3:15pm Camp Snuggle/Active for Affected Children
Location: Suites 1&2
Please make sure to pick up children promptly after sessions.
8:30am – 5:00pm Camp Sunshine (Siblings ages 0-9)
Location: Reston Suites ABC
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. US Capitol Building Tour, National Mall, and lunch. (wear your Conference t-shirt)
9:00am – 4:00pm Research Kick-Off
Location: Regency Ballroom
9:00am – 11:30am

NTSAD Research Opening Session (morning)
Location: Grand Ballroom G, Breakouts, Grand Ballrooms A, B, & C

Join researchers, company representatives, and healthcare professionals in learning about the latest in the research and drug developments for Canavan, GM1 gangliosidosis, Sandhoff and Tay-Sachs diseases.  This session is open to all attendees.  Details TBD. This session is for all attendees.

10:00am – 12:00pm Family Lounge
Lake Anne
11:45am – 12:45pm Lunch
Location: Grand Ballroom D and Corridor 2
1:00 pm-3:00 pm

Disease Specific Breakout Sessions (afternoon)

  • Canavan Research Breakout
    Meet and listen to updates from companies and researchers working on therapies for Canavan.
    Location: Grand Ballroom A 
  • GM1 and GM2 Infantile and Juvenile Research Breakout
    Meet and listen to updates from companies and researchers working on therapies for the infantile and juvenile onsets of GM1 and GM2  gangliosidosis.
    Location: Grand Ballroom B 
  • Late Onset Research Breakout
    Meet and listen to updates from companies and researchers working on therapies for Late Onset.
    Location: Grand Ballroom C
3:15pm – 4:00pm

Quiet Reflection
Location: Grand Ballroom FG

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.

4:00pm – 5:00pm

Location: Grand Ballroom FG

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.

5:30pm – 7:00pm

Research Reception
Location: Grand Ballroom 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 Reston Town Center or perhaps a trip into Washington, D.C., or simply relax in the family lounge with your fellow conference attendees.

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.

“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
“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

Conference Sponsors



  • Laura and Simeon Schindelman




Families and Partners

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

*NTSAD Board Member