Annual Family Conference
Connect, Learn, and Support.
The Annual Family Conference, the cornerstone of our work, is an unforgettable experience for affected children and adults and their rare families including parents, partners, grandparents, healthy siblings, and caregivers. The Conference provides you the rare opportunity to connect with people that truly understand. It is a place where you receive support from professionals and other families and learn about the latest research and symptom management approaches.
Below is the schedule for the 45th Annual Family Conference held in Reston, Virginia from Thursday, June 1 through Sunday, June 4, 2023.
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 This allows 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 it provides an atmosphere of excitement and engagement with sounds, games, and a higher level of stimulation.
(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 have an opportunity to attend their own camp where they enjoy playing together and spending time creating crafts, playing games, and having fun with our trained staff of conference childcare providers in a secure environment inside the hotel.
(Available Thursday, Friday, Saturday)
Healthy siblings — from 10 years old 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 enjoy two outings during the conference: one on Friday and one on Saturday. During the outings, the Youth Group often visit local sightseeing attractions. They are accompanied by Youth Advisors and our very own Dad Chaperones.
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 conference attendees from morning to midnight.
2023 Conference Schedule (sessions and times subject to change)
Check out our 2023 Conference sessions here…
Thursday, June 1, 2023: Support Day
|9:00am – 5:00pm||Registration|
|10:00am – 12:00am||Family Lounge|
|10:30am – 12:00pm||Scientific Advisory Council (SAC) Meeting
This is a closed meeting for SAC members only.
|12:30pm – 2:00pm||Kickoff Luncheon
A special luncheon to kick off the conference with our first collective meal of the conference weekend.
|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.
|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.
|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.
|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.
|5:30pm – 7:00pm||Welcome Dinner
At the end of our first full day of sessions we gather for our Welcome Dinner.
|7:00pm – 9:00pm||Board Meeting (closed meeting for board members only)|
Friday, June 2, 2023: Research Day
|7:45am – 8:45am||Breakfast|
|8:30am – 5:00pm||Registration|
|9:00am – 11:30am||NTSAD Research Opening Session (morning)
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.
|11:45am – 12:45pm||Lunch|
|1:00 pm-3:00 pm||Disease Specific Breakout Sessions (afternoon)
|3:15pm – 4:00pm||Quiet Reflection
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||Commemoration
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
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.
Saturday, June 3, 2023: Health Management Day
|8:00am – 9:30pm||Breakfast|
|8:30am – 12:00pm||Registration|
|9:15am – 11:45am||Health Management for Affected Children (Infantile, Juvenile and Canavan)
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
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: TBD
Stay tuned for more information.
|9:45am – 11:45am||Grandparent/Extended Family Group
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. This session is a closed session, and for extended family members only.
|12:00pm – 1:15pm||Awards Luncheon|
|1:30pm – 3:00pm||Men’s and Women’s Support Groups
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: TBD
Stay tuned for more information. For Late Onset adults only.
|1:30pm – 3:00pm||Late Onset Caregiver Group
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.
|3:15pm – 4:00pm||Support for Families in Clinical Trials
An opportunity for families to share their experiences particpating in a clinical trial study with others who understand.
|5:30pm – 7:00pm||Until Next Year Dinner
A special evening to enjoy each other’s company, take photos, dance and be thankful for this rare and mighty community.
Sunday, June 4, 2023: That’s a Wrap
|8:00am – 10:00am||Brunch and Staff Connections
During and immediately following brunch, the NTSAD staff will be available to hear your thoughts about your experience of the conference. We work to serve and support you, and strive to make each and every conference experience better than the last.
“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.”
“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!”
“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.”
2023 Annual Conference Sponsorship Opportunities
You can support families by sponsoring the Annual Family Conference.
For questions about sponsoring the Conference, please contact Susan, Director of Development and Communications, via email (email@example.com) or by phone (617) 277-4463.
Laura and Simeon Schindelman
Chris Chapman and William Ohle in memory of Emma Artinian
Gerald Cox, MD, PhD
Bonnie and Barry Davis in Memory of Adam
Staci Kallish and Chris Beer