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FAMILY SUPPORT
NTSAD's 39th
Annual Family Conference
Three Days of Support & Southern Hospitality in Dallas, Texas
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If you attended the conference, please take a moment and fill out this short survey. It is an important factor as we begin to plan next year's conference!
CLICK HERE.
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A Big Thank You
68 families. 37 conference sessions. Lots of support, hugs, and empowerment.
The conference was made possible by many people, families, foundations and companies! All of us experienced southern hospitality thanks to the incredible efforts of our families and their friends in Texas. A big shout out to:
Ashley Cornett
Debbie & Bo Harris (
left, with their daughter, Stephanie)
Holly & Todd McDonald
Stephanie & Joey Wright
and our 2017 Conference Committee and volunteers!
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2017 Research Session
This year we hosted two panel discussions focused on gene therapy and clinical trial readiness which was also accompanied by a research booklet containing summaries of research work focus on our group of diseases. (Download the book
here.)
We thank the
Mathew Forbes Romer Foundation for sponsoring and making this session possible. A recording of the session can be watched through the image to the right or through this link
here. Our thanks to Dean and Teryn of
DreamBuilders for recording this year's session!
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Camp Snuggle
Made possible thanks to the Quinn Madeline Foundation and the Cameron & Hayden Lord Foundation
Once again, Camp Snuggle was a camp experience for our kids struggling with these diseases. Our Camp Director, Rhonda DuVall, RN, and her crew of incredible volunteers gave the children a camp experience southern style!
We were also thrilled to recognize Rhonda's work throughout the years, all in memory of her son, Nickolas, who had Tay-Sachs. She received the
Ethel Berkman Power of One award and the love from all the families in the room.
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Our
Older Sibling Group spent their time together, painting #NTSADRocks with inspirational messages, talking with our own Staci Kallish, DO, about careers in genetics, visiting a horse ranch, touring the Dallas Cowboys stadium and watching the Texas Rangers win an exhibition game! All made possible thanks to the generous gifts made in memory of Johnny Pollman and other good friends of NTSAD!
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The
Late Onset group was busy with their sessions, assessments and even a trip to the indoor rodeo! Stephanie Wright said it best when she posted, "You know you're "rare" when your doctors and nurses from NIH and Mass General hospitals, along with the research team of scientists, are with our group at the rodeo having the time of their lives!! The rodeo outing was made possible thanks to the generosity of Phil Rhodes company, William & Heintz Map Corporation.
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The
younger siblings had a fun weekend as well thanks to our friends at Kiddie Corp! They also had a visit via Skype with renowned children's author
Ellen Potter* and her dog, Nigel. She took time to encourage the kids to write and illustrate their own stories offering them guidance along the way. We have future storytellers in our midst thanks to Ellen!
Thank you to the Schindelman Family for allowing these younger siblings a space to play and connect at their own pace and in their own style!
* See her selection of books
here.
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Sarah Mattingly, on behalf of
Soulumination, captured beautiful moments (like Cenzy with her dad above) throughout the weekend. She held over 55 photography sessions for families, bereaved families and special moments that happened throughout the conference. We thank Benton's Family Assistance Fund and the Auerbach family for making it possible!
We were also so happy to give Sarah the
Above & Beyond award this year recognizing her commitment and compassion to our families throughout the conference and beyond. Thank you, Sarah!
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Many Thanks to Our Sponsors!
Amicus Therapeutics
Benton’s Family Assistance Fund of NTSAD
BioMarin
Cameron & Hayden Lord Foundation
EveryLife Foundation of Rare Diseases
Frank M. & Gertrude R. Doyle Foundation
Free Concepts
The Gettleman Family
in memory of Brooke
JScreen
Susan and Thomas Keyes
The Manning Family and Friends
Mathew Forbes Romer Foundation
Christina and Richard Mendler
Sheila and Allen Mushin in honor of their
granddaughter, Alyssa Mushin
NTSAD Delaware Valley Chapter
NTSAD New York Area Fund
Family and Friends of Johnny Pollman
THe Quinn Madeline Foundation
Joyce and Edward Ratner
Sanofi Genzyme
The Schindelman Family
United Synagogue Youth
The Urban Family and Friends
in memory of Brookie
The Vongrej Family
Williams & Heintz Map Corporation
and...all the friends and families who sold raffle tickets, hosted events and made gifts to the Helping Hand Grant Fund!
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The Family Lounge
Made possible by The Urban Family, The Gettleman Family, their friends and the friends and family of the the Cornett/Watsons, McDonalds, and the Wrights for baking and donating all the treats and goodies that kept many of us going throughout the weekend.
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NTSAD: 60 Years of Support
We kicked off our 60th Anniversary year-long celebration during the Conference by debuting a video (
link to the left, click on the picture) and a new campaign theme,
#rareGENEius.
We ask all of you to be a part of the celebration whether you post a "Happy Birthday" video tagging it #rareGENEius, take part in our Day of Hope, or attend one of our events in Boston or New York. Stay tuned to future emails with more details!
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NTSAD's
40th Annual
Family Conference in 2018!
We are excited to announce next year's conference will be in
Jacksonville, Florida
from April 12 to April 15, 2018 at the
We will have a
reunion
of older "classes" so if you're a veteran family, please consider coming back, to meet new families, see old friends and bring your experiences and updates with you!
And if you want to be a part of the reunion committee to reach out to others, contact Diana, Director of Family Services,
here.
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national tay-sachs & allied diseases association (ntsad)
susan kahn
, executive director (email
here
)
becky benson
, conference coordinator (email here)
veronica huang
, science & research communications intern (email
here
)
i
ngrid miller
, office manager (email here)
diana pangonis
, family services director (email
here
)
emily randall
, development associate (email
here
)
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2001 beacon street
suite 204
boston, ma 02135
(617) 277-4463
www.NTSAD.org
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