Leading the worldwide fight to treat and cure
Tay-Sachs, Canavan, GM1 and Sandhoff diseases

NTSAD’s 43rd Annual Family Conference Schedule

NTSAD’s 43rd Annual Family Conference
Schedule of Event and Session Descriptions

 

We’re pleased to bring you the schedule of events for the 43rd Annual family Conference.  Please note that all sessions are held in Eastern Daylight Time.  While planning your attendance, please note some sessions are specifically created for and limited to parents, grandparents and extended family, siblings, late onset, or all attendees.  Please check back frequently as session times and content are subject to change. 

 

Thursday April 22, 2021

 

Welcome and Keynote Address                                                              12-1 pm
Please join us for our opening session of the 43rd Annual Family Conference.  NTSAD is pleased to have Kyle Bryant and Sean Baumstark, hosts of the Two Disabled Dudes podcast. They will welcome us with their special brand of humor, while discussing their perspective on cultivating the courage to live beyond circumstance and laugh along the way.

This session is open to all attendees.

 

Break                                                                                                    1–1:30 pm

                                                                                                

Parent Peer Group                                                                                 1-3 pm
During this session parents currently caring for their affected children and those who are bereaved will gather in this support-based group setting to discuss the challenges in their lives as a family affected by rare disease. 

This session is closed to outside participation and is only for parents currently caring for their affected child, or those who are bereaved.

 

Grandparent and Extended Family Support Group                                1:30–3 pm
This support session is designed for grandparents, aunts, uncles, and others who are extended family members of affected children to discuss the challenges in their lives as affected by rare disease and how to support their loved ones. 
This session is closed to outside participation and is for extended family members only. 

 

Adult Sibling Support Group                                                                  1:30–2:30 pm
This session is new this year.  It is a chance for adult siblings, ages 18 and older to come together to discuss challenges as affected families, and how their experiences have shaped their lives since their sibling’s diagnosis.
This session is closed to outside participation and is for adult siblings only.

 

Break                                                                                                     3–3:30 pm

 

Advocacy: Sharing Your Story                                                                 3:30–5 pm
Join us in this new session focused on advocacy and empowering ways you can participate in advocacy efforts, big and small. You also will learn how to craft your story to make an impact.

This session is open to all attendees.

 

Virtual Family Lounge                                                                                6–7 pm
The Family Lounge, an Annual Family Conference tradition, has gone virtual as well!  Join us for a moment of downtime in the evening to get together, relax, connect, and chat as a group.

This session is open to all attendees.

 

 

Friday April 23, 2021


A Full Day of Research Programming                                                        12–5 pm
Multiple sessions throughout the day including updates on research and disease-specific breakouts.  More details to be announced soon. 

These sessions are open to all attendees.

 

Virtual Family Lounge                                                                              6–7 pm
Join us again for a moment of downtime in the evening to get together, relax, connect and chat as a group, while we enjoy our traditional Pizza Party virtually!

This session is open to all attendees.



Saturday April 24, 2021

 

Bonus Session! Selfcare Workshop                                                    10–11:15 am

Ilyce Randell of Canavan Research Illinois will be hosting an informative and interactive workshop on Saturday morning focused on selfcare and the benefits of yoga to reduce stress.  Make sure to bring your yoga mat, and we’ll see all you early birds there. 

This session is open to all attendees.

 

Break                                                                                              11:15 am – 12 pm

 

Health Management for Affected Children                                         12–1:30 pm
In this detailed care-tip session, experienced parents and professions will share with families the myriad of factors involved in the care of affected children.
This session is designed for parents currently caring for their children, but is open to outside participation.

 

Living with Loss                                                                                  12–1:30 pm
In this session, bereaved families (including adult siblings, grandparents, and other extended family members) will come together in a support group style setting to discuss life after the loss of a child.
This session is closed and is for bereaved parents and extended family members only. 

 

Late Onset Group                                                                                   12–1 pm
Kyle Bryant and Sean Baumstark, of the Two Disabled Dudes podcast, return to offer their perspective as they facilitate this discussion with Late Onset members to focus on the challenges of living with a life-altering diagnosis.
This session is closed to outside participation and is for our Late Onset attendees only.

 

Late Onset Caregiver Session                                                               12 –1 pm
This session will offer a time for Late Onset caregivers to gather together and discuss the duality of their roles not only as caregivers, but as parents and spouses as well.

This session is closed to outside participation and is for our Late Onset caregivers only.

 

Break                                                                                                   1:30 – 2 pm

 

Camp Snuggle Craft Time and Chat                                                       2–3 pm
Families caring for their child are invited to join in this interactive session with our Camp Snuggle leaders for a connecting time to chat and craft together.
This session is closed to outside participation and is only for families caring for a child.  


Caring for Your Canavan Child                                                              2– 3:30 pm
Ilyce Randell of Canavan Research Illinois, and mom to Max will facilitate this session focused on the unique challenges of care management our Canvan families encounter from birth, through school age, and beyond. 

This session is closed to outside participation and is for Canavan parents only. 

Break                                                                                                     3–3:30 pm

 

Camp Sunshine Group Chat and Craft Time                                           3:30–4:30 pm
Calling all siblings ages 4-11!  Our Camp Sunshine leaders are hosting some together time with an interactive chat and crafting, so settle in and get ready for some special sibling fun.
This session is closed to outside participation and is for families of healthy siblings ages 4-11 only.

 

Break                                                                                                     4:30– 5 pm

 

Family Planning and Carrier Screening                                                   5 – 6 pm
The question of expanding your family can be a particularly challenging one for carrier couples.  In this session we’ll dive into the discussion of available options.  We’ll also discuss ways to help educate other family members on the importance of carrier screening. 
This session is closed to outside participation and is for parents only.

 

Virtual Family Lounge                                                                               6–7 pm
Get those ingredients ready and join us again for a moment of downtime in the evening to get together, relax, connect and chat as a group, while we enjoy our signature NTSAD cocktails and mocktails!

This session is open to all attendees.

 

Sunday April 25, 2021

Commemoration Ceremony                                                                    12–1 pm
The commemoration ceremony is a special time where we honor our loved ones who have left us too soon.  We invite all to join, listen to poems, and to light a candle for a their loved one when they see their tribute and photo(s).
This session is open to all attendees.

 

Break                                                                                                       1–2 pm

 

Men’s Group                                                                                              2–3 pm
Specifically designed for dads, both caring for their children and those who are bereaved, this session is a chance for the dads of NTSAD to come together to discuss their roles as partners and fathers in their rare family.
This session is closed to outside participation and for dads of affected children only. 

 

Women’s Group                                                                                        2–3 pm
Facilitated by Rare Mamas founder, Nikki McIntosh, this session is specifically designed for moms, both caring for their children and those who are bereaved, this session is a chance for the moms of NTSAD to come together to discuss their roles as partners and fathers in their rare family.
This session is closed to outside participation and for moms of affected children only. 

 

Youth Group with Mentors                                                                      2–3 pm
Specially designed for siblings between the ages of 12-18, the Youth Group session is a discussion among healthy siblings along with their older adult siblings on their challenges and roles within their rare family. 
This session is closed to outside participation and is for youth group siblings (ages 12-18) only.

 

Late Onset Group                                                                                     2–3 pm

A combined session for our Late Onset members and caregivers this session will be a time to discuss the challenges associated with living with and caring for someone with a rare diagnosis.
This session is closed to outside participation and is for Late Onset members and their caregivers only.

Break                                                                                                        3–3:30 pm

 

Live Thank You Closing Session!                                                               3–4 pm

Please join us as we wrap up our conference with a thank you to all our attendees, sponsors, collaborators, and more.  Together we’ll share final thoughts of the weekend as we connect to close out the 43rd Annual Family Conference.
This session is open to all attendees.

 

Why attend?

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Please contact Becky Benson, Conference and Family Services Coordinator here with any questions or concerns that are conference related.

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