Trisomy.org is the internet’s most complete source of medical and family resources for trisomy 18 & 13

NEW WEBSITE HOME PAGE Design..
What is Trisomy 18?
What is Trisomy 13?
What are the Related Disorders?
Trisomy 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, 20, 21, 22



So much information... Click here to go DIRECTLY to the Trisomy.org website.
Slideshow, Videos, Family Stories, Professional Articles and Literature, E-care book,
Facebook Page and Group support communities where families gather to share their experiences.

SOFT is the internet’s most complete source of medical and family resources for trisomy 18 & 13.

♥ For Expectant Parents

♥ For those Parenting a Child

♥ For those Remembering a Child

♥ SOFT Welcomes Medical Professionals

Trisomy 18, Trisomy 13 Awareness Month (March) - Follow www.TRISOMY.ORG and Facebook Pages for events

ITS THAT TIME OF YEAR AGAIN. CELEBRATING TRISOMY AWARENESS MONTH
MARCH 2015
FOLLOW THE www.TRISOMY.ORG EVENTS on the website and Facebook Pages

www.trisomy.org

SOFT Support Organization for Trisomy 18, 13 and Related Disorders
https://www.facebook.com/Trisomy18.Trisomy13.Awareness.SOFTrelatedDisorders

SOFT'S Annual Trisomy Awareness Page
United and Together we Stand... Trisomy Strong https://www.facebook.com/TrisomyAwareness.SOFT

Submit your: Trisomy Child's Story &  Jumping 4 Trisomy Videos,
Purchase  tee shirts, bumper stickers, trisomy strong wristbands and more...
Create a Facebook Trisomy Awareness Profile photo and add a 

Trisomy Awareness banner to your Facebook page.

(use the facebook links above the photo)

Contact SOFT www.trisomy.org or www.trisomytalk.com for more info

"Every Life is a Gift" March for Life DC and Walk for Life West Coast - Highlighting the Challenging Prenatal Diagnosis of Trisomy 21, Trisomy 18, Trisomy 13 and Spina Bifida

WATCH MARCH FOR LIFE EVENTS NOW on
EWTN Eternal Word Television Network

http://www.ewtn.com (you can view off the website,  EWTN APP or check your local listing for the EWTN schedule).

I was very happy to see the March for Life 2015 theme is “Every Life is a Gift.”
They are addressing the challenging prenatal journey when families are given a poor prenatal diagnosis, highlighting the trisomy experience and many pressures put upon women and families to abort these unique babies.

EWTN TV  will be following the PRO-LIFE events

March for Life 2015 DC http://marchforlife.org/

Walk for Life 2015 West Coast http://www.walkforlifewc.com/

Pray with the Bishops to End Abortion 

On January 22 our nation will mark the 42nd anniversary of Roe v. Wade, the Supreme Court decision that made abortion legal throughout the U.S.

Since that tragic decision, more than 56 million children's lives have been lost to abortion, and many suffer that loss -- often in silence. 

Join thousands of Catholics across the country coming together in prayer for a "culture of life" from Saturday, January 17 -  Sunday, January 25!
http://www.usccb.org/about/pro-life-activities/january-roe-events/nine-days-of-prayer-penance-and-pilgrimage.cfm

Remember the UNBORN Powerful Virtual Video Memorial click here

Motherhood And The Gift Of The “Rite For The Blessing Of A Child In The Womb” - United States Conference of Catholic Bishops

The Rite for the Blessing of the Child in the Womb can be done by a priest or deacon and is available in English and Spanish.  The Rite opens with readings of the Visitation, the Annunciation, the prophecy of Sarah’s conception of Isaac, or other similar readings.  It includes a blessing for the mother to “grant her comfort in all anxiety and make her determined to lead her child along the ways of salvation,” the text reads.  And there is a blessing for the father to “grant him courage in this new responsibility and make him an example of justice and truth for this child.”  An excerpt of the blessing reads:  Click for PDF (English and Spanish) 

Trisomy 13 Life Worth Living 

I've added a January 2015 update on Natalia's most recent progress on her SOFT Story page. Click here http://trisomy.org/?our-story=natalia-marie

Be sure to visit the SOFT website and Facebook Page for daily updates on trisomy living.
Click here http://trisomy.org

Trisomy.org the 2014 Annual SOFT International Conference is going on now in Virginia

For the MOST Current Trisomy Support www.trisomy.org
Just a quick link right to the FACEBOOK page where photos and videos are being shared.
https://www.facebook.com/Trisomy18.Trisomy13.Awareness.SOFTrelatedDisorders

Trisomy Care of the Infant and Child with Trisomy 18 and 13 Related Syndromes

The updated 2014 version of Ann & John Carey's "Carebook" is finished and has been posted to the website. It is an e-Book and is a FREE download.

www.Trisomy.org

To PRINT do directly to the PDF

March is Trisomy Awareness Month

www.TRISOMY.org

Free Information & Literature for  Families:  Clicking this link takes you to a brief form which, when completed, opens a page with many free documents about trisomy.  Select what interests you and read, print or save it.    This free information includes Trisomy 18, Trisomy 13 and Other Chromosome Disorders fact sheets, growth and surgery information, an explanation of common problems, sample newsletter,  conference and book order information, and much more.   At the bottom of this home page, several helpful and inexpensive books can be ordered.  Para  documentos en español, clic aqua.

 Trisomy 18 – What is it? …click to read “Trisomy 18 Facts.“  This syndrome is a disorder of human chromosomes which occurs in approximately 1 in 7,000 live born infants, due to the presence of an extra #18 chromosome…

♥ Trisomy 13 – What is it? …click to read “Trisomy 13 Facts.“  This syndrome is a disorder of human chromosomes which occurs in approximately 1 in 10,000 live born infants, due to the presence of an extra #13 chromosome…

♥ Other Trisomy or Related Conditions:      Many families have children with other chromosomal disorders. Perhaps the best explanation for these many disorders is found in a Related Disorder Facts presentation by Dr. Stephen Braddock, Professor of Clinical Genetics, given at a SOFT Conference. Also, read about Dr. John Carey’s presentation at a  SOFT conference.   A useful video can be found here.

WWW.TRISOMY.ORG

3 Tickets for $10 or
9 Tickets for $25
Enter as often as you’d like during the month of MARCH!
Winners name will be draw by SOFT’s President, Barb VanHerreweghe on March 31st
When DONATING, be sure to ADD the term *SPECIAL TREATS JAR RAFFLE* in the Special Purpose Donations BOX right above the SEND MY DONATION button.
http://trisomy.org/about-us-trisomy/donate-to-soft/ 

* A big THANK YOU to Penny, Devon’s momhttp://trisomy.org/our-story/devon-victor/ who created this Special Treats Jar. (Valued at $80)
1) A special needs child being pushed by an Angel surrounded by flowers, butterflies, dragonflies under a Rainbow in the Heavenly Clouds
2) Heavenly Angels over the rainbow, grabbing the balloons rising to the heavens
3) Tree of Life where birds, butterflies and dragonflies gather
4) A families love is shared around the world

You can see more of Penny’s creative talents on her Facebook page Clay Cuties by Pennyhttps://www.facebook.com/ClayCutiesbyPenny

TRISOMY.ORG - SOFT E-mail Blast! - Current Events! - Hot Trisomy NEWS Topics & Updates!

Did you receive a SOFT e-mail blast within your e-mail inbox yesterday? 
5 Current SOFT Community topics of interest.
If not... Register NOW ITS FREE!!!

Join the www.Trisomy.org 

SOFT Facebook Page and SOFT Facebook Group 

Valentine’s Video of Our Amazing Trisomy Children on then SOFT Trisomy.org website

Trisomy Valentine’s Video - http://trisomy.org/?page_id=14463

To view off YOU TUBE https://www.youtube.com/watch?v=5ez27Rl_3rI

2013 SOFT International (Annual) Conference Photos

SOFT Facebook PAGE 

SOFT Facebook Group

Trisomy Mother's Baby and Children - SOFT Support Organization for Trisomy 18, 13 and Related Disorders Mother's Day 2013 Slideshow Presentation

SOFT Trisomy Families Celebrate Mother's Day!
Look at this Beautiful Collection of Mother's and their babies and and children, embracing cherished moments. 

Slideshow Presentation 
trisomy.org  (click here)
(scroll down the page to view)

March is Trisomy Awareness Month - 2013

SOFT Support Organization for Trisomy 18, 13 and Related Disorders invites you to meet our children through photos provided by their families and scripted by SOFT parent Gerri Meggett of the SOFT Trisomy Awareness committee. 

Come and “enjoy the SOFT rainbow” of life and love with words to make you smile at www.trisomy.org New photos will be featured each day of March. 

Support Organization for Trisomy 18, 13 and Related Genetic Disorders (SOFT) www.trisomy.org 

March is Trisomy Awareness Month! 

SUBMIT your Triosmy Awareness Event and Inspired IDEAS on the SOFT website. trisomy.org/trisomy-awareness-month 

Be sure to add the SOFT Page and Group to your Favorites *adjusting your notification delivery so you can see the daily activity. 

SOFT's Facebook PAGE www.facebook.com/Trisomy18.Trisomy13.Awareness.SOFTrelatedDisorders
SOFT's Facebook GROUP

www.facebook.com/groups/TrisomySOFT 

Praying the Rosary for Trisomy Children - Please Join with us

Please join us when you can in praying a Rosary for a little Trisomy 18 girl.. Beautiful Jill DelSignore daughter Giuliana is in critical condition. http://www.youtube.com/watch?v=mSKsCW4WxUw
You can keep updated on the SOFT page
https://www.facebook.com/groups/TrisomySOFT

SOFT has been supporting Trisomy Families for 33 + Plus years

For Trisomy 18, 13 and Related Support, Please see the SOFT site for a NEW Family Packet http://www.trisomy.org

SOFT Times Newsletter

SOFT Times Newsletter

The SOFT Times - A newsletter for families 

with children who have chromosome disorders

The SOFT Times newsletter has helped connect families for nearly three decades. Letters from families and articles from professionals are compiled, edited and printed in a quarterly newsletter, which is mailed to SOFT members who have paid their current yearly membership fee, and to professional members.

The SOFT editor is a parent volunteer who takes on this task four times a year. SOFT pays for the printing and mailing of the SOFT newsletters. The free SOFT welcome packets for new families contain a sample newsletter as well as information about trisomy conditions and the SOFT support organization...MORE

There is a link on the SOFT page to see a SAMPLE NEWSLETTER.. well worth a view.

SOFT has been supporting Trisomy Families for 33 + Plus years

For Trisomy 18, 13 and Related Support, Please see the SOFT site for a NEW Family Packet http://www.trisomy.org

Looking for Trisomy Support? Be sure to also check out  FACEBOOK Pages and Groups.

National NEWS - Study reports Trisomy kids enrich their families lives

Parents and Many Pediatricians Disagree over treatment of babies born with Trisomy 13 or Trisomy18

By Dave Andrusko

Yesterday we ran a story by Alex Schadenberg which reinforced something we know to be true but is not widely understood: That most parents of children with Trisomy 13 or Trisomy18 conditions (in this case Canadian parents) consider their child to be happy and found that their lives were enriched by the child. He drew that conclusion based on the results of a study published in the current edition of the Journal “Pediatrics.”

I’m going to pick up here on the disquieting truth that these affirming observations are very different than that attitude of many pediatricians towards these conditions.  READ MORE

SOFT has been supporting Trisomy Families for 33 + Plus years

For Trisomy 18, 13 and Related Support, Please see the SOFT site for a NEW Family Packet http://www.trisomy.org

Medical Professional Literature, Articles and Resources

Neonatal Research Blog on the family experience of trisomy 13 and 18

TRISOMY 13 LIFE 

facebook group 

Click here

PRENATAL, PRE-BORN, LIVING and GRIEF Support.

Many families gathering together again from the

Original Living with Trisomy 13 .org Community.

Currently the livingwithtrisomy13.org  is rolling to SOFT at Trisomy.org for quick and immediate support literature.

TRISOMY LIFE trisomy 13 Patau syndrome trisomy 18 Edwards syndrome and images 

“Our children are not a diagnosis”: the family experience of trisomy 13 and 18

One of the most well-published academic neonatologists posted an article about our trisomy 13/18 children. He offers great advice to his colleagues. 
Click here for full Neonatal Research Blog article

Many wonderful comments too!!!
50 Plus at this posting!
Click here

33 Years Strong SOFT Organization for Trisomy 18, 13 and Related Disorders has been the ROCK of Trisomy Families with yearly conventions, medical literature, books and quarterly newsletters, be sure to view their publications off the website. 
trisomy.org 

SOFT has been supporting Trisomy Families for 33 + Plus years

For Trisomy 18, 13 and Related Support, Please see the SOFT site for a NEW Family Packet http://www.trisomy.org

Collage created by Barb Farlow International Patient Safety Advocate 
(Text within image)
OUR COMMUNITY HAS A VOICE
Janvier A, Farlow B, Wilfond B. The Experience of Families With Children With Trisomy 13 and 18 in Social Networks. 
Pediatrics  July 23 10.1542/peds.2012-0151
With heartfelt gratitude to Dr. Annie Janvier and Dr. Ben Wilfond 

Natalia - Full Trisomy 13 http://www.trisomyfavoritethings.blogspot.com

You Can Help CREATE CHANGE in how Trisomy kids are Medically Treated by SHARING YOUR FAMILY Trisomy 18, 13 or Trisomy Related Disorder STORY

SHARE Your living trisomy Family experience on SOFT USA. 
Support Organization for Trisomy 18, 13 and Related Disorders

SOFT USA is the one website Families & Professionals go to when looking at the most current literature on Living Surviving Trisomy kids. The National Library of Medicine NLM and the National Institute of Health NIH Share the SOFT website as the 33year strong website supporting Families and Professionals. Your childs' story trisomy medical issues and experience will make a difference for families to follow.

TRIS Tracking Rare Incidence Syndrome

Be sure to enter the Data (Survey) on Your Trisomy Child to help with the most current Evidence Based Medicine Treatment and Practices for our Trisomy Children

Noahs Never Ending Rainbow  "Noah's Never Ending Rainbow continues to be a support when most other organizations stop giving. They not only care about the person affected with this horrible disorder but also the family."  
Read More...

SOFT has been supporting Trisomy Families for 33 + Plus years

For Trisomy 18, 13 and Related Support, Please see the SOFT site for a NEW Family Packet http://www.trisomy.org

A new book ~ What Every Woman Needs to Know About Prenatal Testing

Amy Julia Becker Thin Places Faith, Family and Disability - opens the discussion regarding her new book, share your experience and or thoughts to help her cover all the unique situations women find themselves in... Thank you for your input.

My Next Book? What Every Woman Needs to Know About Prenatal Testing

Many of the comments already offered are interesting...

SOFT has been supporting Trisomy Families for 33 + Plus years

For Trisomy 18, 13 and Related Support, Please see the SOFT site for a NEW Family Packet http://www.trisomy.org