News
Medical Providers May Not Deny Medical Care Based on Disabilities
The New York Times reports: “Federal civil rights office rejects rationing medical care based on disability or age.” The U.S. Department of Health and Human Services’ civil rights office told medical providers on Saturday that they may not deny medical care to people on the basis of their disabilities or age during the coronavirus emergency.…
Read More
Triage guidelines for hospital admission during crisis
A message from Dr. John Carey, SOFT Medical Advisor Greetings to Families and Friends of SOFT, At this unreal time, let me say first that I share with all the intense and widespread concerns and anxiety engendered by COVID-19. Despite working every day at home now, and on occasion at the hospital, the implications of…
Read More
Important Update Regarding 2020 SOFT Conference
To Our SOFT Family: SOFT is an organization that has always and will always put families first. In light of the arrival of COVID-19 in the United States, the Board of Directors convened to discuss appropriate actions that should be taken in order to keep our members, and most importantly our SOFT children, safe. We…
Read More
A Message from the SOFT Medical and Scientific Advisory Board Regarding Covid-19
To Our SOFT Family: You likely know by now that the 2020 SOFT Conference will be postponed until July 2021 due to concerns for our health related to the coronavirus. While updates on COVID-19 (coronavirus illness) pandemic are publicized on the TV news regularly and are widely available online, the Medical & Scientific Advisory Board of SOFT considered…
Read More
March is Trisomy Awareness Month
It’s March and in SOFT’s world that means Trisomy Awareness Month! Every March our SOFT community celebrates Trisomy Awareness Month. This is a time when we share awareness and education of Trisomy conditions, celebrate our children who are beating the odds and remember our sweet Angels who left us far too soon. The message we deliver…
Read More
Video – Cardiac Surgery in Infants with Trisomy 18 and Trisomy 13
A new day is dawning for our kids with heart issues. For years many of our families have had life saving surgeries denied simply because of their child’s diagnosis. Dr. James Hammel at Children’s Hospital in Omaha is looking beyond the label, giving our families hope and our children a chance at survival with life…
Read More
2018 ACMG Conference
SOFT was represented at the 2018 ACMG (American College of Medical Genetics) Conference held April 10- 14, 2018 in Charlotte, NC. SOFT Attendee: Dr John C Carey, Medical Geneticist and Pediatrician, Primary Children’s, SLC, UT – SOFT Medical Advisor SOFT member exhibitors: Ann & Frank Barnes, parents of Megan (T18) 1985-2004 Rhonda Yarrington & 3…
Read More
2015 ACMG Meeting
SOFT was among the 150 exhibits at the American Clinical Genetics Meeting sponsored by the American College of Medical Genetics and Genomes in Salt Lake City, Utah March 25- 27th, 2015. Over 2,200 professionals attended the meeting, which consisted of over 40 sessions, workshops, and forums. Board members Debbie Dye and Raquel Wagner (with daughter…
Read More
2014 ACMG MEETING
Mark, Faye and Morghan (trisomy 18) represented SOFT at the 2014 American College of Medical Genetics and Genomics (ACMG) in Nashville, TN. “I was told by several people we had the best booth because we had MORGHAN. A picture may be worth a thousand words….but .. a LIVE.. FULL Trisomy 18 Child rendered some speechless and…
Read More
