News
2023 Conference
At this time, planning for the 2023 SOFT Conference is in process. Information will be posted as it becomes available. The tentative location and dates are Greenville, SC, and the dates are 7/12/2023 through 7/15/2023.
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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Lean on Us: An Overview and Review of TRIS Project Activities
From the SOFT 2021 Virtual Conference Lean on Us: An Overview and Review of TRIS Project ActivitiesDeborah A. Bruns PhD 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.
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