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Leading the Fight to treat and cure
Tay-Sachs, Canavan, Sandhoff, GM1 and related diseases

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NTSAD 40th Annual Family Conference

Thursday, April 12 to
Sunday, April 15, 2018

Hyatt Regency Riverfront
225 E. Coastline Dr.
Jacksonville, FL 32202

Join us for three full days of support, empowerment and knowledge. You will meet others who understand and the professionals who are committed to being there for all of us. We hope you can make it! 

Browse the Virtual Annual Family Conference Brochure here.

Gifts to support the conference experience can be made here.

Registration

(includes all meals from Thursday lunch to Sunday brunch)
          

Hotel Reservation

Deadline: March 8, 2018

Adult: $320 (ages 13 and up)
Child: $150 (ages 3-12)
Affected Children are free

Click here to register for the conference.

 

 

Hotel Rate: $182 (including hotel tax)

Click here to make a hotel reservation.

 

 

Getting to Jacksonville

 

Important Deadlines

Airports
Jacksonville International Airport, 15.1 miles
 
Transportation Options
Complimentary shuttle within a 3 mile radius of the hotel

Checker Yellow Cab of Jacksonville
(904) 345-3333

Super Shuttle
1-800-258-3826
On Site discounted parking rate of $15/vehicle/night
 

 

Travel Resources

Mercy Medical Airlift
mercymedical.org

National Patient Travel Center
patienttravel.org

Miracle Flights
miracleflights.org

 

Helping Hand Grant Applications Due
January 1, 2018 (If you've missed the deadline, contact our Conference Coordinator This email address is being protected from spambots. You need JavaScript enabled to view it., or Director of Family Services This email address is being protected from spambots. You need JavaScript enabled to view it..)

Conference Registrations Due
March 21, 2018

Hotel Reservations Due
March 21, 2018

 

 

 

 

Dear Friends -

We miss you!

The plans for our 40th Annual Family Conference have begun and some of us “old-timers” were thinking how wonderful it would be to see some of our “old” friends again to celebrate our children and loved ones, each other and show our newer families that they’ll be okay.

So, consider this your official SAVE the DATE!

When:           Thursday, April 12 to Sunday, April 15, 2018

Where:         Hyatt Regency Riverfront Hotel
                      225 E. Coastline Dr.
                      Jacksonville, FL 32202

Since it might have been some time since your last conference, you may wonder what’s different now?

  • The conference now officially opens on Thursday morning with introductory and welcome sessions leading into an afternoon of family support groups and culminating with our traditional Thursday Welcome Dinner.
  • The siblings who are under nine years old have fun in Camp Sunshine, the siblings between 10 and 17 years old have their own Sibling Youth Group with their own sessions on Thursday and field trips on Friday and Saturday. Camp Snuggle is staffed by our one and only, Rhonda DuVall, and is a beautiful opportunity to snuggle with the beautiful kids who inspire us every day. Camp Active is a fun place for the older kids affected by the juvenile forms of the diseases.
  • The Research Update session continues to change as the research landscape changes but it remains our Friday event. Stay tuned for details in the months to come to hear what we have planned.
  • The Commemoration Ceremony is still an incredibly moving experience; however, several years ago we added time for quiet reflection in the hour preceding the ceremony.

We hope you consider it and celebrate the extraordinary bond we all share.  Together, we can reminisce, honor our loved ones, share the present, and look forward to the future, all while we catch up with old friends and meet new ones. 

Whether it’s for just one day, or the entire weekend, we would love to see you. 

Let us know if you want to attend, have any ideas and/or suggestions for this special reunion.

We hope you join us to make this 40th Annual Family Conference Reunion and the rest of the conference both edifying and uplifting for all our attendees. 

On behalf of the Reunion Committee and NTSAD, be sure to save the date…we’d love to see you there!

Most sincerely,

Risa Asnen, Conference, NTSAD Board (This email address is being protected from spambots. You need JavaScript enabled to view it.)
Becky Benson, Conference Coordinator (This email address is being protected from spambots. You need JavaScript enabled to view it.)
Monica Gettleman, Family Services, NTSAD Board (This email address is being protected from spambots. You need JavaScript enabled to view it.)
Meryl Kallish, NTSAD Board (This email address is being protected from spambots. You need JavaScript enabled to view it.)
Diana Pangonis, Director of Family Services (This email address is being protected from spambots. You need JavaScript enabled to view it.)

 

NTSAD 39th Annual Family Conference Update

 

The 39th Annual Family Conference took place in Dallas, Texas from March 29 to April 2, 2017. While the conference is always a weekend of research, education, and support this year we were treated to an exceptional display of southern hospitality. Friends and family members came out in droves to welcome us to Texas.

Sixty-eight families were in attendance for a schedule full of sessions, including those for families caring for their children, bereaved families, Late Onset members, grandparents, and healthy siblings.

Highlights included free professional photography from Sarah Mattingly provided by the Soulumination organization, the new NTSAD Rocks! awareness effort, launch of the new #rareGENEius advocacy hashtag, outings to a rodeo, horse ranch, and even both a tour of the AT&T stadium and a game at the Texas Ranger's stadium!

Families heard from researchers in the form of panel discussions regarding gene therapy and the importance of clinical trial readiness. It was recorded this year thanks to DreamBuilders Resources and can be viewed here.

Two long-time NTSAD friends and supporters were recognized for their efforts within the organization:

Rhonda DuVall, mom of Nickolas, who had Tay-Sachs until 2000, was given the Ethel Berkman Power of One award for her continued work as an RN, and head of Camp Snuggle. Rhonda proclaimed her desire to give the affected children in attendance a "real" camp experience citing words from mom, Holly McDonald as her driving force. Holly said she appreciated the work the Camp Snuggle volunteers put into the conference child care because, "This is the only camp Cora will ever attend."

Sarah Mattingly was given the Above and Beyond award for her continued commitment and dedication to serving the families of NTSAD. After undergoing brain surgery in 2005, Sarah began to shift her focus in life. She saw an interview with Lynette Johnson, founder of Soulumination, and first learned about NTSAD. She knew she wanted to help, and signed up to volunteer to photograph the families. In the many years since, Sarah has become a part of the Annual Family Conference experience, and trusted friend to the families of NTSAD.

Families experienced a weekend like no other, where they can come together, open up, share, and connect. Thought we may come as strangers, we quickly become friends, and ultimately leave as family. In parting we say...until next year!

The 40th Annual Family Conference, at the Hyatt Regency Riverfront in Jacksonville, FL, April 12-15, 2018 will feature a Family Reunion for all the families who have ever been a part of NTSAD. We encourage you all to come and join us as we look back on the beginning's of NTSAD, the journey to where we are now, and a look forward into the future.

To read more about the conference, click here for the electronic version of April's issue of "Keeping Up with NTSAD" here.

 

NTSAD 39th Annual Family Conference

Thursday, March 30 to
Sunday, April 2, 2017

Dallas/Addison Marriott
Quorum by the Galleria
14901 Dallas Pkwy
Dallas, Texas 75254

 

Join us for three full days of support, empowerment and knowledge. You will meet others who understand and the professionals who are committed to being there for all of us. We hope you can make it! 

You can order your NTSAD 2017 Conference t-shirt here also commemorating NTSAD's 60th Anniversary!

Download the conference brochure here.

Registration

(includes all meals from Thursday lunch to Sunday brunch)
          

Hotel Reservation

Deadline: March 8, 2017

Adult: $315 (ages 13 and up)
Child: $150 (ages 3-12)
Affected Children are free

Click here to register for the conference.

 

 

Hotel Rate: $162 (including hotel tax)

Click here to make a hotel reservation.

 

 

Getting to Dallas

 

Important Deadlines

Airports
Dallas Fort Worth Airport - 20 miles to hotel 
Dallas Love Field – 10 miles to hotel 
 
Transportation Options 
Super Shuttle, $19/person from both airports (1-800-258-3826) 
Taxi, $35 from DLF and $50 from DFW 
 
Complementary self-parking on site for NTSAD guests 
Daily Valet, $15 
Overnight Valet, $22 

 

 

Travel Resources

Mercy Medical Airlift
mercymedical.org

National Patient Travel Center
patienttravel.org

Miracle Flights
miracleflights.org

 

Helping Hand Grant Applications Due
January 1, 2017 (If you've missed the deadline, contact our Conference Coordinator This email address is being protected from spambots. You need JavaScript enabled to view it., or Director of Family Services This email address is being protected from spambots. You need JavaScript enabled to view it..)

Conference Registrations Due
March 8, 2017

Hotel Reservations Due
March 8, 2017

 

 

 

 

Saturday, September 17, 2016

The day where hope knows no boundaries.

UPDATE: We have surpassed the $200,000 in funds raised for research since 2011 through Day of Hope events families and their friends and communities have held! Thank you to every person who made that possible!

Community events around the world bring hope to finding a cure for Tay-Sachs, Canavan, Sandhoff, GM1 and all allied diseases.



   

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