Resources
Video – Shining moments from the TRIS project
The first of a series of videos from the SOFT 2020 Virtual Conference. Deborah A. Bruns, Ph.D. shares shining moments from the TRIS project: An overview and review of activities with Deborah A. Bruns, Ph.D. About Deborah A. Bruns Ph.D:Deborah A. Bruns is Professor and Off-campus program coordinator for the Special Education program in the…
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2020 SOFT Virtual Conference is coming in July
The 2020 SOFT Virtual Conference planning is underway and we are really excited to share our event with you. The team has been working hard to make sure our virtual event feels as much like home as our in-person events do. Because of the virtual format, we have stretched conference out a few days. It…
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Video: Routine Health Care for Children with Trisomy 13
What should parents and medical professionals know and expect as reasonable health standards for children with Trisomy 13? Dr. John Carey, MD and medical advisor for SOFT discusses current medical standards and expectations for children living with Trisomy 18 or Edwards Syndrome. From the 2013 TrisomyTalk.com series of medical webinars. Dr. John Carey, MD and…
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Video – Constipation 101
If you get any two or more parents of children with Trisomy together the conversation will inevitably turn to the subject of constipation. Constipation is one of the most common health issues that families of a child with a diagnosis of Trisomy 18, 13 or other related disorder face. Managing your child’s bowels becomes a…
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Common Problems of Babies with Trisomy 18 or Trisomy 13
A consistent list of problems and concerns has been reported by parents through the years. Viability of their newborn is their first concern, followed by decisions about management of care. Feeding difficulties and constipation are common, often lifelong problems; care of infants with these issues follows below.
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Membership & Diagnosis Analyses
Membership – by Diagnosis (MOS = Mosaic) Trisomy_18 Trisomy_18MOS Trisomy_13 Trisomy_13MOS Trisomy_9 Trisomy_9MOS Other Total Membership – by Member Type Total Supporter Medical_Prof Families Editor Admin Others Note:Â Some Medical Professionals have children with trisomy so the “Families” count will not equal the Total Count in the first display.
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International Trisomy Support Groups and Organizations
Provision of information and links does not constitute SOFT USA’s endorsement of any group. The International Trisomy 18/13 Alliance (ITA) is a volunteer, not-for-profit organization focusing on trisomy 13 and trisomy 18, (also known as Patau and Edwards syndromes respectively).  The mission is to offer trisomy 13 and trisomy 18 support groups, physicians and other professionals, accurate…
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If you ask me, I will tell you
I know we might not have known each other long. Maybe you’re a friendly cashier, or someone buying the same grapes as me at the grocery store. Maybe we’re taking turns on a machine at the gym, or we just met at a professional development opportunity. We make friendly banter, which I’m probably not enthused…
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Video: Routine Health Care for Children with Trisomy 18
What should parents and medical professionals know and expect as reasonable health standards for children with Trisomy 18? Dr. John Carey, MD and medical advisor for SOFT discusses current medical standards and expectations for children living with Trisomy 18 or Edwards Syndrome. From the 2013 TrisomyTalk.com series of medical webinars. Dr. John Carey, MD and…
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SOFT State/Province Contact List
Use the scrollbar at the end of the list to scroll to the right! Or place your cursor in any column name and left-click; then use your right/left arrow keys to scroll right or left! State_City Contact Family Family_Experience Email Phone
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