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

2022 Annual Family Conference Sessions

Details
Last Updated: Wednesday, 08 June 2022 15:57

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.

Family Lounge 
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.

2022 Conference Sponsorships

Details
Last Updated: Wednesday, 18 May 2022 11:01

The Annual Family Conference is a highlight of the year for NTSAD’s families.  

National Tay-Sachs & Allied Diseases Association (NTSAD) is the oldest patient advocacy organization in the country, serving families and individuals coping with a diagnosis of Tay-Sachs, Canavan, GM1 Gangliosidosis, and Sandhoff diseases. For 65 years, NTSAD has led the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community. Supporting families is the center of everything we do.

NTSAD’s Annual Family Conference

Support the Conference here.

Since 1978, NTSAD has presented the Annual Family Conference to provide families a safe space to support and learn from one another, to gain knowledge directly from researchers and industry members working on potential therapies, and to contribute and share their experiences to further enhance the development of clinical trials. Highlights of the 2021 NTSAD Annual Family Conference, hosted virtually, include:

  • More than 500 people registered.

  • 140 families attended.

  • 26 countries were represented.

  • Largest Research Day ever with 30 presenting researchers and industry members.

As long as it is safe to do so, we plan to gather in person for our 2022 Annual Family Conference. It has been three years since we have hosted an in-person conference. Highlights from the 2019 in-person conference include:

  • More than 300 people in attendance.

  • Approximately 100 families participated.

  • 33 conference sessions were held.

  • 55 families received a Helping Hand Grant to cover some expenses, making attendance

    possible.

  • Camp Snuggle and Camp Active were favorite one-of-a-kind experiences for affected children.

  • The Quiet Reflection and Commemoration ceremonies honored loved ones in personal and meaningful ways.

How does your sponsorship make a difference?

The NTSAD Annual Family Conference is made possible through generous support from individuals, families, foundations, and industry partners. Sponsors of the Conference provide families and individuals a unique experience that includes:

  • Symptom and health management.

  • Community meals, Welcome Reception, Awards Luncheon, and Celebratory Dinner.

  • Family photography sessions with professional photographers.

  • Research Day sessions with disease-specific breakout groups.

  • Camp Snuggle and Camp Active for affected children.

  • Camp Sunshine and Youth Group for healthy siblings.

  • And much more that makes the weekend a fulfilling and memorable experience for families.

Support the Conference here.

 

Please contact Susan Keliher, Director of Development and Communications via email This email address is being protected from spambots. You need JavaScript enabled to view it. or by phone (617) 277-4463 to receive a sponsorship package.

  pdf 2022 Sponsorship Levels and Form (974 KB)  

 

 

2022 Annual Family Conference

Details
Last Updated: Wednesday, 18 May 2022 11:02

NTSAD 44th Annual Family Conference

Thursday, July 7 to Sunday, July 10, 2022

Renaissance Denver Central Park Hotel
3801 Quebec St
Denver, CO 80207

Register Now.

Apply for a Helping Hand Grant here.

Support the Conference.

Reserve a hotel room.

We are hopeful that we can gather again this summer for a long weekend filled to the rim with support, togetherness, tears, laughter, and hope. Any family faced with the diagnosis of Canavan, GM1 gangliosidosis, Sandhoff or Tay-Sachs disease is welcome. 

From sessions on the latest research and clinical trials, to those offered on support, education, and advocacy, our families learn, share, and spend their time with others who are walking a similar path.  Whether in sessions, during meals, enjoying the Family Lounge, or just out by the fire, the sense of community is always an amazing sight.

Highlights from our last in-person gathering at the 2019 NTSAD Annual Family Conference include:

  • Over 300 people attended
  • Almost 100 families were able to join us
  • We offered 33 conference sessions
  • 55 families were allocated a Helping Hand Grant to enable their attendance
  • Free photo shoots for 50 families, courtesy of Soulumination
  • Camp Snuggle and Camp Active were again one-of-a-kind experiences for our affected children
  • The Quiet Reflection and Commemoration Ceremonies honored our loved ones in very personal and meaningful ways
  • The healthy sibling Youth Group ventured out to Adventure Landing and the North Carolina Museum of Science and Natural History

Keeping Families Safe

Due to the on-going pandemic, all individuals who participate in NTSAD’s 2022 Annual Family Conference must comply with the following COVID vaccination and mask guidelines:

For the safety of the entire NTSAD community, all conference participants who meet age eligibility for COVID vaccination are strongly encouraged to be fully vaccinated per CDC guidelines by the start of the conference.  For those individuals aged two and older who are unvaccinated, proof of a negative PCR test taken within 48 hours prior to your arrival at the conference is required.

Proof of vaccination will be required at the time of online registration and/or during the check-in process prior to the start of the conference. In addition, due to the vulnerability of the individuals and families we serve, masks will be encouraged in all NTSAD sponsored spaces including sessions, camps, the Family Lounge, and during meals (whenever not actively eating or drinking) for all individuals over two years of age who can safely wear a mask.

These guidelines are subject to change based on the status of the pandemic and CDC guidelines.  To ensure the safety of the vulnerable population we serve, NTSAD leadership will follow recommendations from its medical advisors and current CDC, state, and local guidelines. 

2020 Virtual Family Conference

Details
Last Updated: Thursday, 11 June 2020 17:17

NTSAD 42nd VIRTUAL Annual Family Conference

Thursday, May 28 to Sunday, May 31, 2020

Connection. We need it more than ever. And that’s what NTSAD is all about. Each year, the family conference provides a lifeline to families. Our 42nd Annual Family Conference was held virtually and seamlessly.  We had lots of connection and heart. All heart. 

The conference was our largest ever, with nearly 400 people registered. Our community even stronger. 

The NTSAD community-- our family of patients, parents, children, grandparents, siblings, caregivers, partners, researchers, and industry experts-- came together--providing care-giving tips, updates on research and clinical trials, and sharing their experiences and their grief. 

For four, memorable days, we defied distance. People participated from across the U.S. from Alaska, California, Florida, Illinois, Massachusetts, New York, Pennsylvania, and Washington, and from around the globe including Brazil, Canada, France, Germany, Switzerland, Singapore, and more! We had many first-time attendees, including people who lost loved ones many years ago and found comfort and compassion within the NTSAD community. 

We sincerely thank everyone who attended. We thank you for your commitment to research and identifying effective treatments, your dedication to each other and NTSAD families everywhere. 

Together we honored all the children and adults who fight with grace and to all the individuals we have lost and memorialized on Sunday during our moving Commemoration Ceremony.

You're welcome to light a candle in your home and watch the ceremony here.

Thank you to all of the speakers and session facilitators, researchers, volunteers, and conference committee members who led and planned an incredible and first-ever virtual conference. We will further highlight your incredible work by posting recordings of each session on the NTSAD website later this week. 

We also thank our lead sponsor Sanofi Genzyme and all of our dedicated sponsors for their generous support, enabling us to broaden our reach and meaningfully engage our community.

Most of all, we thank our families. You inspire us everyday. And no matter what---Together We Are All Rare, All Family, and ALWAYS CONNECTED. 

Wanting more connection and more heart? Watch the two videos we shared during the opening and closing ceremonies of the conference that feature several, beautiful NTSAD families. 

Enjoy our powerful opening video that launched the conference.


This touching and beautiful video closed our conference.

Finally, at the conference, Board President Staci Kallish announced NTSAD's new mission statement to better reflect our commitment to identifying effective treatments, uniting our efforts, and remaining focused on serving families. 

NTSAD leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community. Supporting families is the center of everything we do.

Thank you for being a vital part of our community. Yesterday. Today. And for a better tomorrow. 

Vayle Rose Fund

Details
Last Updated: Monday, 29 November 2021 23:40

In March 2019, just before turning 6 months old, my daughter Vayle Rose was diagnosed with Canavan disease, an extremely rare neurological disorder that causes progressive damage to nerve cells in the brain.  As a single mom whose only child has a life-threatening disease, my life turned completely upside down.  The hopes and dreams I had for her, for us, were shattered and my life felt like it was over.  Since her diagnosis, I have been striving to give Vayle the best life possible as she fights every single day against this horrible disease. 

The goal of Vayle's fund is to underwrite Canavan research, family support, and carrier screening.

Please make a gift today, DONATE HERE.

To make a gift via PayPal, DONATE HERE.

Thank you from the bottom of our hearts for your support!

 

 

More Articles ...

  1. 2019 Imagine & Believe Ads and Tickets
  2. 2019 Imagine & Believe Sponsorships, Tickets & Ads
  3. 2019 Imagine & Believe
  4. Embree Alexander Fund

Login