Blog
International Trisomy Alliance (ITA) Publications
The International Trisomy Alliance (ITA) website is no longer in use. This organization has produced many excellent publications which families can read and download. Links to these publications are below; click on the booklet title to open it as a .pdf file…
Read MoreSOFT Conference 2022 Covid-19 Precautions
Questions and concerns about COVID-19 are regularly posed to health care professionals regarding the care for persons with trisomy 13, trisomy 18, and related trisomy syndromes. These issues were particularly relevant in the recent decision of the SOFT Board of Directors to host the hybrid 2022 Conference this July 13-17 in Roanoke Virginia. The SOFT…
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2022 Kari Holladay “SOFT Friends” Video Submission
ANNUAL SOFT Friends Video EVERYONE IS INVITED to submit pictures for the annual “Kari Holladay SOFT Friends Video” a special presentation honoring all our children through pictures and music. The video will be presented at the 2022 Roanoke VA SOFT Conference in July. DETAILS: PHOTOS: submit only 1-2 pictures per child (can include siblings…
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Video – 2022 SOFT Medical Advisory Board Round Table
First ever SOFT Medical Advisory Board Round Table Recorded March 18, 2022 Featuring: Dr. John C. Carey Dr. Glenn Green Dr. James Hammel Dr. Shaji Menon Dr. Scott Showalter This video is the replay of the first SOFT Medical Advisory Board Round Table hosted by Dr. John C. Carey. This Q & A style roundtable…
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Trisomy Awareness Month Proclamations 2022
2022 Trisomy Awareness Month Begins March 1st! As of March 10, 2022, SOFT has received 2022 Trisomy Awareness Month Proclamations from 17 states. Although March has been declared and recognized as Trisomy Awareness Month for over 10 years it has taken some time to get the month officially recognized by individual states. Our numbers are…
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2022 Trisomy Awareness Profile Frames & Covers
Help Spread Trisomy Awareness with a Trisomy Awareness Profile Frame and Cover Image. To help you raise Trisomy Awareness SOFT has created Trisomy Awareness Profile Frames and Cover Images for you to use on your Facebook page and across all of your social media accounts. Facebook is limiting the number of organizations and companies that…
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Trisomy Awareness Month Panel with Members of the SOFT Medical Advisory Board
Did you know that SOFT has a Medical Board? March is Trisomy Awareness Month and we have some special events planned for our members! Did you know that SOFT has a Medical Board? On March 18th we will be bringing together a few of our Medical Board members to answer your questions. We know a…
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2022 Trisomy Awareness “SOFT” Wear Collection
March is Trisomy Awareness Month We are excited to release the 2022 Trisomy Awareness “SOFT” Wear Collection. Update: The special order of Trisomy Awareness Shirts is closed. You can still order directly from our Trisomy Awareness Store on Spri.ng. This year we are doing something different and having our shirts screen printed. Because of this…
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The Erin Jorgensen Memorial Scholarship
When we first had our daughter Erin we imagined all of the highlights to come in her life: her first day of school, prom, going off to college, getting married. Once we were given her diagnosis, when she was two weeks old, we realized that those highlights may never come. We got to be with…
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Video – Perspectives on the Care and Management of Children with Trisomy 13 and 18 Syndromes
Intermountain Children’s Primary Hospital – Pediatric Grand Rounds John C. Carey, MD, MPH, FAAP, FACMG Emeritus ProfessorUniversity of Utah School of MedicinePediatric Genetics Primary Children’s Hospital Objectives: List the important manifestations and complications occurring in the 2 trisomy syndromes Identify the key issues surrounding the controversies in care of infants with trisomy 13 and 18
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