Tracking Rare Incidence Syndromes

Mission Statement

The Tracking Rare Incidence Syndromes (TRIS) project seeks to increase awareness and knowledge for families and professionals touched by rare trisomy conditions and aims to facilitate improved decision making for optimal services and supports for children and their families.

Anthony, angel, Trisomy 13

Kira, 22 months, Partial Trisomy 10p

July, 2008: Debbie Bruns, Shirley Truesdale Lockwood and Marissa Cooley-Code presented a session at the Support Organization for Trisomy 18, 13 and related disorders (SOFT) conference in Denver, Colorado (July 25, 2008).

September, 2008: Debbie Bruns will present a poster session about TRIS at the 62nd annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine in Atlanta, Georgia (September 17-20, 2008)

Barb Farlow presented the First Annual Sue MacRae Lecture On Ethics and Patient-Centred Care at the University of Toronto Joint Centre for Bioethics. The presentation is entitled: Making Tough Decisions Together:  A Family’s Perspective of the Vital Importance of Ethics and Patient-Centred Care.

Kylie Sheffield wrote a book about her experiences titled "Not Compatible with Life: A Diary of Keeping Daniel." You can download it here in PDF format (3.3 MB)

TRIS Survey data is in the process of being analyzed in the following areas:

• Neonatal intensive care unit experiences
• Support from immediate and extended family members
• Provision of educational and therapy services

Surveys can still be completed if your survey has already been activated.

Also, please use the Pre-Enrollment request form or email us at tris@siu.edu if you have questions. We look forward to hearing from you.

Thank you,
TRIS project Staff

The Tracking Rare Incidence Syndromes (TRIS) project seeks to increase the knowledge base on rare incidence trisomy conditions, and to make this information available to families and interested educational, medical and therapeutic professionals. Related outcomes will be the development of appropriate services, advance treatment options, and supports during the prenatal, newborn and subsequent developmental periods.  Children affected by T18, T13, and other rare syndromes possess unique needs requiring education of those involved in their daily, educational and medical care.

A critical part of the TRIS project is dissemination of The TRIS Survey. The survey will be used to collect and analyze data focusing on common medical conditions, developmental milestones, therapeutic needs, family-related concerns, and demographic data of families with a child (living as well as deceased) with a rare trisomy condition.

Sponsors:

• Support Organization for Trisomy 18, 13 and related disorders (SOFT)
  Barb Van Herreweghe
  http://www.trisomy.org/
• Noah's Never Ending Rainbow
  Dana Tehako-Esser
  www.noahsneverendingrainbow.org
• Hope for Trisomy 13 and 18
  Bess Raulerson
  http://www.hopefortrisomy13and18.org/

External Resources

• Rainbows Down Under
• Living with Trisomy 13
• Rowan Tree Foundation

You, too, can make an online, tax-deductible donation to TRIS.