Conference Agenda

Support Day

Thursday June 1, 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
9:00am – 5:00pm Registration
Location: Registration Room
10:00am – 12:00am Family Lounge
Location: Lake Anne
2:00pm – 4:45pm Camp Snuggle/Active 
Location: Suites 1 & 2
Please make sure to pick up children promptly after sessions.
2:00pm – 4:45pm Camp Sunshine 
Location: Reston Suites ABC
Please make sure to pick up children promptly after sessions.
10:30am – 12:00pm Scientific Advisory Council (SAC) Meeting
This is a closed meeting for SAC members only.
Location: The Living Room
12:30pm – 2:00pm Kickoff Luncheon
A special luncheon to kick off the conference with our first collective meal of the conference weekend.
Location: Grand Ballroom D and Corridor 2
2:30pm – 5:00pm Translating preclinical CRISPR editing in Tay-Sachs and Sandhoff rodent models to human clinical trials
Symposium and Working Group
Click here for more details
2:30pm – 4:30pm Parent Peer Group (PPG Session)
For parents of affected children, this session is a chance to talk about the day-to-day lives of caring for an affected child, as well as coping after their passing. This session is closed and restricted just to parents of affected children, both currently caring for their children, and those who are bereaved.
Location: Grand Ballroom A
2:30pm – 4:30pm Grandparent and Extended Family Group
We know what an important role Grandparents and extended family members play in the lives of their families. When a life-altering diagnosis affects your loved ones, we know it’s devastating. The Extended Family Peer Group is a place to talk about life in relation to that diagnosis and your role in the family as you offer support. This is a closed group for extended family members only.
Location: Grand Ballroom E
2:30pm – 4:30pm Late Onset Group
Adults living with the Late Onset forms of GM1, Tay-Sachs and Sandhoff come together to share their stories, experiences and what they aspire to do in their lives. This a closed group for these adults only.
Location: Grand Ballroom B
2:30pm – 4:30pm Youth Group (Healthy Siblings ages 10-17)
Thursday’s session will be a chance for our older siblings to get to know one another, and find out how they’re alike, as well as what makes them unique as special siblings. Closed for siblings only.
Location: Grand Ballroom C
5:30pm – 7:00pm Welcome Dinner
At the end of our first full day of sessions we gather for our Welcome Dinner.
Location: Grand Ballroom D and Corridor 2
7:00pm – 9:00pm Board Meeting (closed meeting for board members only)
Location: Grand Ballroom G

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.

“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

“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

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