We encourage families to arrive at the hotel by the evening of Wednesday, July 6th to be able to join the opening session on Thursday, July 7th at noon.
Open throughout the conference:
Camps Snuggle and Active (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.
Camp Sunshine (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.
Youth Group (Available Thursday, Friday, Saturday)
Healthy siblings, ages 10 to high school senior age, have the chance to come together as their own group with a whole new program for the day on Thursday, including a Youth Peer Group (YPG) session (just like the PPG sessions the parents attend), and other support-based activities while their parents are in their own groups. The Youth Group will have two (2) retreats during the conference. One on Friday and one on Saturday to see the sights around the Greater Denver area, complete with 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 attendees from morning to midnight.
Thursday, July 7, 2022: Support Day
9:00 am-5:00 pm Registration
10:00 am-12:00 am Family Lounge
11:00 am-12:00 pm First Time Attendee Orientation
We’re thrilled to gather again in person for the first time in three years. We also know this means there will be many families attending for the first time. Join the Family Services Team in this session specifically for first time attendees where we will discuss the conference weekend and answer questions. It’s a time to get to know each other, share your story of diagnosis and why you’re here, and to find out about what to expect from the conference all weekend long.
12:30 pm-2:00 pm Kickoff Luncheon
To kick off the conference we’re offering a welcome luncheon for all attendees featuring a special keynote and welcome program as we come together for our first collective meeting of the conference weekend.
2:30 pm-4:30 pm 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.
2:30 pm-4:30 pm 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.
2:30 pm-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.
2:30 pm-4:30 pm 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.
5:30 pm-7:00 pm Welcome Dinner
The first dinner together after three years followed by time in the Family Lounge.
7:00 pm-9:00 pm Board Meeting
Friday, July 8, 2022: Research Day
8:00 am-9:00 am Breakfast
8:30 am-5:30 pm Registration
9:15 am-11:30 am NTSAD Research Opening Session (morning)
Join the clinicians, researchers, industry partners, and the NTSAD Scientific Advisory Countil in learning about the latest in the research effort for our allied diseases. This session is for all attendees.
11:45 am-12:45 pm Lunch
1:00 pm-3:30 pm Disease Specific Breakout Sessions (afternoon)
Canavan Research Breakout
Meet and listen to updates from companies and researchers working on therapies for Canavan.
GM1 Research Breakout
Meet and listen to updates from companies and researchers working on therapies for GM1 gangliosidosis.
GM2 Infantile and Juvenile Research Breakout
Meet and listen to updates from companies and researchers working on therapies for Sandhoff and Tay-Sachs.
Late Onset Research Breakout
Meet and listen to updates from companies and researchers working on therapies for Late Onset.
3:45 pm-5:15 pm Support for Families in Clinical TrialsNavigating a clinical trial is new territory for families coping with Canavan, GM1, Sandhoff, and Tay-Sachs. We understand that many questions and uncertainties may arrise in the decision to pursue a clinical trial, and while undergoing one. This session will focus on information and support for those families in the midst of these decisions. Families only.
5:30 pm-7:00 pm Research Reception
We end Research Day with a time to mingle and enjoy heavy appetizers and drinks in this informal cocktail-style setting. The rest of the evening is yours to enjoy the sights of Denver, take a break and head to the pool, or relax in the family lounge with your fellow conference attendees.
Saturday, July 9, 2022: Health Management Day
8:00 am-9:30 am Breakfast
8:30 am-12:00 pm Registration
9:15 am-11:45 am 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.
9:45 am-11:45 am 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.
9:45 am-11:45 am Late Onset: Independence and Mobility
Movement and staying active is important to everyone’s health, and for adults with Late Onset it can be complicated. This session will discuss the ways to stay safe, exercise and remain strong.
9:45 am-11:45 am 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.
12:00 pm-1:15 pm Awards Luncheon
1:30 pm-3:00 pm Men’s and Women’s Support Groups
These sessions are designed specifically for parents of affected children. Both groups are a place to discuss the roles we take on in our lives in relation to our affected children. These are closed sessions for parents of infantile, juvenile and Canavan children only.
1:30 pm-3:00 pm Late Onset: Overall Well-being
This session will focus on the stresses and challenges that come with a diagnosis – from managing anxiety to maintaining relationships. For Late Onset adults only.
1:30 pm-3:00 pm 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.
3:15 pm-4:00 pm Quiet Reflection (preceding Commemoration)
A time for those who have loved ones that have passed to display any treasured mementos in the Commemoration Ceremony room, and pay their respects as they walk around the room to view the items presented by other families. The Commemoration Ceremony will immediately follow the time of Quiet Reflection.
4:00 pm-5:00 pm Commemoration Ceremony
We hold this Commemoration ceremony each year to pay respects to our loved ones who have passed. A candle will be lit for families in attendance who have a loved one gone too soon, and a slide show of pictures will play as their names are read aloud. While this session is open to everyone, we understand the sensitive nature of this ceremony and attendance is never required. Please feel free to attend, or not, in keeping with whichever you feel most comfortable. We do ask that attendees to refrain from going in and out of the room during the ceremony.
5:30 pm-7:00 pm 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, July 10, 2022: That’s a Wrap
8:00 am-10:00 am Brunch and Staff Connections
During and immediately following brunch, the NTSAD staff will be available to connect and would love to hear your thoughts as you share your conference experience. We are always working to serve you, and strive to make each and every conference experience better than the last.