Welcome to TrisomyTalk!

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Terre & Krissy Soft Picnic 2011TrisomyTalk.com is your support site bringing families of Trisomy together. Our intention is to bring you information and ideas that will help you, your child and your family on your Trisomy Journey. If you are newly diagnosed we will help you get through the scary times, if you’re a seasoned parent we’ll help you be ready for the next stages of your child’s development. Together the Trisomy Roller Coaster doesn’t seem quite so crazy!

Our webinar series has begun. Check out the schedule for live online webinars relevant to your life with your Trisomy Child.

This is your chance to help determine what some of those topics will be and to speak up and ask for the information you need! Click here to complete the survey and let us know how we can help you!

What's New on TrisomyTalk!

Running for Trisomy – The Story Behind the Story of Running with Krissy

Running for Trisomy – The Story Behind the Story of Running with Krissy

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This beautiful video was put together by Larry Wheat to share “the Story behind the Story” of “Running with Krissy for Trisomy Awareness and Infant Loss.Continue Reading

Running for Trisomy Awareness – Larry and Krissy are back on the trail!

Running for Trisomy Awareness – Larry and Krissy are back on the trail!

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In the spirit of March Trisomy Awareness month “Running with Krissy” is back in full swing, and Larry and Krissy are back on the trail! Larry and Krissy will run in the Alamo 13.1 in San Antonio, Texas on March 23, 2014. This will be their second race and our vision is growing! When LarryContinue Reading

Running with Krissy T-Shirts

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T-Shirt orders are closed. Thank you for your interest! Order Your Running with Krissy T-Shirt Here! This year’s shirt is available in either a basic Cotton/Poly and also in a Dri-fit style. We are also offering child sizes in the basic Cotton/Poly only. Adult sizes are: Small, Medium, Large, X-Large and XX-Large. Child sizes are:Continue Reading

Running with Krissy Awareness Ribbon Request

Running with Krissy Awareness Ribbon Request

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Running With Krissy

Running With Krissy

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Trisomy 18 Teen to Participate in the Portland Marathon!

Trisomy 18 Teen to Participate in the Portland Marathon!

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Kristina, a 13 year old middle school student from Lake Tapps, WA will participate in the upcoming Portland Marathon on October 6th in Portland, OR. Thousands will be there, running for their cause. What makes this unique is Krissy herself and the reason she’s participating. You see, Krissy is non-verbal and she can’t walk independently. Krissy was diagnosedContinue Reading

Golf Tournament to Remember Child with Trisomy 18 and Raise Funds for Trisomy Support

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2nd Annual Simon Crosier Memorial Golf Tournament July 6, 2013 Spring Creek Golf Course Seneca, KS Click here to read entire article!Continue Reading

Palliative Care ~ Truly Life Affirming Support or Wolf in Sheep’s Clothing?

Palliative Care ~ Truly Life Affirming Support or Wolf in Sheep’s Clothing?

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Palliative Care, my daughter was about 7 the first time I heard the phrase. At the time, my understanding was that it was just another word for Hospice. As background, my daughter was born in 2000 with Full Trisomy 18. We had received her diagnosis prenatally so we felt that we were as prepared asContinue Reading

Fashion photographer focuses on those with genetic conditions to reframe beauty

Fashion photographer focuses on those with genetic conditions to reframe beauty

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This segment ran on NBC’s Rock Center June 7, 2013. Rick Guidotti, the photographer in this feature was at the 2007 SOFT (Support Organization for Trisomy) Conference in Utah. We were one of two families that successfully bid for a family photo shoot. The shoot was done at the picnic. The photos he took ofContinue Reading

Common Anomalies in Trisomy 18 and Trisomy 13 Children!

Common Anomalies in Trisomy 18 and Trisomy 13 Children!

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As parents of Trisomy children we are all too familiar with the “standard Trisomy line”, incompatible with life. We know that this, among many other common “truths” about Trisomy are simply “possibilities” and that only time will reveal a child’s path and destiny. Over the next few weeks we’re going to have a conversation aboutContinue Reading

SOFT News

Fund Raising to Support Trisomy – Families Paying it Forward

Fund Raising to Support Trisomy – Families Paying it Forward

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Please scroll to view the current events that are raising money to support SOFT (the Support Organization for Trisomy.) If you would like to submit your fund raiser for Trisomy support organizations please submit it here:Continue Reading

Living Children with Trisomy 18 and Trisomy 13 Invited to Participate in Reseach Study on Communication!

Living Children with Trisomy 18 and Trisomy 13 Invited to Participate in Reseach Study on Communication!

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SOFT Families of children living with FULL Trisomy 18 or Full Trisomy 13 age 3 and older are invited to participate in a study. This is a continuation of the study that was announced last summer at the SOFT Conference in St Louis. Follow the information below if you would like to enroll your livingContinue Reading

Register with SOFT – Support Organization for Families of Trisomy 18, Trisomy 13 & Other Related Genetic Disorders

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Registry of Surgeries Performed on Trisomy Children – One of many Resources SOFT Provides!

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Did you know that your membership with SOFT benefits more than just you? Its true! SOFT maintains a registry of surgeries performed on children with a Trisomy reported by parents on their membership forms. This information can sometimes help other families find doctors. The registry is also a resource for studies which help doctors learnContinue Reading

Support Organization for Trisomy 18, 13 and Related Genetic Disorders – SOFT!

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Over the years we have made friends across the country and around the world through our SOFT Membership. It is my belief that every family facing a pregnancy with a possible Trisomy diagnosis needs to connect with SOFT as a very first stop on the Trisomy Journey. A membership in SOFT not only connects youContinue Reading

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