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SOFT invites you to meet our children through photos provided by families and scripted by a parent from 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 in March.
Public Facebook Group: Support Organization for Trisomy (SOFT)
News and Events
FREE – FREE – FREE: SOFT membership is now free – simply register at no cost by selecting the “Membership” tab on the Home page’s menu…at the top of the page.
March 31, 2013
Celebrating Bella: Our Gift From God
Town Hall
March is also Trisomy Awareness Month. For my family, this has become a time to celebrate the life of our daughter Bella. Bella was born almost five years ago with trisomy 18, a severe genetic condition that I believe makes every day with her a gift …
March 28, 2013
Gabby has mosaic trisomy 14, a rare disorder. See Fox8 news interview with Gabby, the soon-to-be winner of the Miss Amazing NC pageant!
March 27, 2013
♥ St. Louis Mom’s Book Battles Trisomy Misconceptions: ST. LOUIS, MO (KTVI). Trisomy is a genetic disorder that most of us know little about it. Sheryl Crosier of St. Louis is helping dispel misconceptions and raise awareness with her new book, “I Am Not A Syndrome — My Name Is Simon”.
March 26, 2013
♥ Breaking NEWS - Listen to an interview with Jill DelSignore, Mother to Giuliana, living with trisomy 18. Live interview sharing there is a future BEYOND diagnosis of a trisomy syndrome. Thank You WKBN for always helping families stay informed.
Guest Interviews – WKBM – 27 First News – Local News – Youngstown, Warren, Columbiana, Ohio – Sharon http://www.wkbn.com/
♥ Noah’s Never Ending Rainbow Meet The Jackson 5. Our friends Tim and Anne Jackson (Dad and Mom to handsome Samuel who has Trisomy 13) work in their local school system and have involved them in Trisomy Awareness Month for the past three years now. They have a dress code; no employee in the school system or student in grades 5-12 are allowed to wear blue jeans to school. During the month of March prior to spring break, any faculty, staff or student in Milan Middle School or Milan High School can pay $1 every Friday and will be allowed to wear jeans on those days. The faculty and staff at Milan Elementary School will be allowed to wear jeans every Friday in March for a one time donation of $5. Drum roll please…The Jackson 5 and the students, faculty & staff of Milan Special School District raised $2,000.00 for Trisomy Awareness Month ‘GENE Fridays’ to be split between Noah’s Never Ending Rainbow and SOFT – Support Organization for Trisomy 18, 13, and Related Disorders, WHOHOO! You are all simply TRImazing and we can’t thank you enough. Awareness within the schools is priceless…WTG Jackson 5, we so ♡ you! Consider doing something similar within your child’s school or your place of employment. Let the MARCH for Trisomy awareness continue…
March 24, 2013
♥ BBC Three Counties Radio – Iain Lee, Edwards syndrome, Hertfordshire expansion and club or Country? Parents fight for treatment for their 14 week old daughter who is “incompatible with life” Listen to this BBC Radio (England) program about a parent’s fight for medical treatment for their Trisomy 18 child. Go to the 2 hour, 3 minute point of the broadcast to hear this segment.
March 21, 2013
This is Giuliana’s friend Phillip. He has Trisomy 9. I also coordinated this board for his amazing family. Very excited at the combined total outreach these boards will have for trisomy awareness month this year!! Gabi Serb
Can you tell, it’s Trisomy Awareness Month?
♥ March 21, 2013 New fetal test guideline The Japan Times. A new prenatal detection test that can predict whether a fetus has either Down’s syndrome or Trisomy 18/13 raises ethical issues. by Melinda Joe On March 6, …
♥ March 20, 2013 Trisomy fundraiser set for March 23 Iron River, MI…a story from the Iron County Reporter: Among the challenges facing families of a Trisomy disorder patient, medical attention and associated costs are paramount. “Starting in April, Taylor (Mosaic Trisomy 8) will be going to Ann Arbor for kidney treatment,” his mother said. “We used to go to Children’s …
♥ March 19, 2013 Positive cell-free fetal DNA testing for trisomy 13 reveals confined placental mosaicism : Genetics We report on a case in which cell-free fetal DNA was positive for trisomy 13 most likely due to confined placental mosaicism. Cell-free fetal DNA testing analyzes …
♥ March 18, 2013 Celebrating Bella: Our Gift From God. A March 18, 2013 article by former Congressman Rick Santorum, celebrating Trisomy Awareness Month…mentions SOFT.
♥ March 18, 2013 Article from USA Today regarding North Dakota’s proposed abortion legislation which includes banning abortions for reason of genetic defect such as Down syndrome; reported here only as news; SOFT takes no position on such matters.
♥ March 17, 2013 March Is Trisomy Awareness Month An article from the U.S. National Institutes of Health. Some people have trisomy conditions—those related to having an extra chromosome in most or all of their cells, for a total of 47 chromosomes in all. An extra …
♥ March 17, 2013 Trinity girl wins North Carolina Miss Amazing Pageant High Point Enterprise: The 10-year-old Trinity girl, who has a chromosome disorder called Trisomy 14 mosaic, won her age division in the North Carolina Miss Amazing Pageant, …
♥ March 16, 2013 Prenatal diagnosis to detect down’s syndrome and trisomy 13&18 to …This test covers Down syndrome (trisomy 21), trisomy 13 and 18. … Trisomies of chromosomes 13, 18, and 21, which are genomic mutations showing change in …beforeitsnews.com/…/prenatal-diagnosis-to-detect-downs-synd…
♥ March 16, 2013 SOFT – Support Organization for Trisomy Alexis Sophia Alves …Alexis Sophia Alves, Trisomy 18, Leicester, MA, USA, 1/5/2012 – 9/7/2012. Alexis “Lexi” was born on January 5, 2012. She was our fourth child and we had had …trisomy.org/our-story/alexis-sophia-alves/
♥ March 16, 2013 Non-invasive prenatal genetic screening: an interview with Dr …News-Medical.net
The Panorama test can help physicians screen for chromosomal abnormalities associated with trisomy 21 (Down syndrome), trisomy 18 (Edwards syndrome), …
♥ March 16, 2013 Non-Invasive Prenatal Testing: Is This the Brave New World We Want? Huffington Post. The comprehensive roll out of NIPT would result in testing for trisomies among a considerable number of the approximately 5 million American women who …
March 13, 2013 - The Official Trisomy 13 Awareness Day!
♥ Trisomy 13 Facts /Publications
♥ Trisomy 13 SOFT Family Stories
♥ Denver Bioethics Meeting, Pam Healey
In early October in Denver, a group of SOFT parents professionally involved within the trisomy community joined other professionals, including neonatologists, pediatricians, genetic counselors, palliative care doctors and nurses, a hospital chaplain, a pediatric…
♥ March 11, 2013. Speaking at Lawton Junior High on March 18th: Brandon, a teen with Mosaic Trisomy 18, will be speaking at a local Junior High School bringing awareness to Trisomy 18, genetic discrimination, and the issue of bullying. He will be sharing at an open house at Argyll School on March 19th.
♥ March 9, 2013 Are you JOINING US? SOFT Lights the Way at Providence, Rhode Island Wednesday, July 17 – Sunday, July 21, 2013. Meet other families at the 27th Annual SOFT International Conference.
♥ March 7, 2013 Publicaciones en Español SOFT mantiene una serie de documentos en el idioma español. Haga clic aquí para ver y leer!
♥ Generous spirit shines with cool donation for Tiffany It’s amazing how one simple gift can make a big difference in someone’s life. Tiffany has a severe disability, a rare condition chromosomal abnormality Trisomy 10p …
♥ Salem Boy Superhero, Blue Ear Teams up with Iron Man to Raise Awareness for Children’s Hearing Loss Anthony was born with the genetic disorder, Mosaic trisomy 22, and its completely deaf in his right ear with partial hearing in his left. Anthony and his mother traveled to New York city this week to join forces with Iron Man in unveiling a new poster from Marvel and hearing aid company.
Selina Ramirez Help us Share Soleil’s Sunshine! Sharing Soleil’s Sunshine. This year on May 9, 2013, will be Soleil’s 5th birthday. Leading up to her birthday, I would like to challenge everyone to do something positive. By “Sharing Soleil’s Sunshine”, I am hoping that by possibly doing random acts of kindness, we will be able to spread a little Sunshine on someone’s dark…
♥ March 6, 2013 Angelo-Jacks-Special-Star. Our aim is to raise awareness of trisomy 18 and to help provide non-medical 3D and 4D ultrasounds for the parents of babies diagnosed with trisomy 18. We would like to provide those who choose to give their child every chance at life the opportunity to watch the child grow in the womb, and to have ever- lasting memories.
VIEW some of our SOFT Publications:
♥ Common Problems of Babies with Trisomy 18 or 13 An article summarizing the problems children with a trisomy disorder commonly experience. This is a .pdf article and you will need Adobe reader to view it.
♥ Trisomy 18 Facts – An introduction to Trisomy 18♥ Trisomy 13 Facts – An introduction to Trisomy 13
♥ “Gene” Fridays: Students, Faculty and Staff of Milan High School, Milan Middle School and Milan Elementary School (faculty & staff only) are allowed to wear blue jeans on designated Fridays in March for a donation to SOFT and Noah’s Never Ending Rainbow. Tim and I both work in the school system and also both attended school here. We were high school sweethearts…our oldest child graduated from Milan High School and Noah & Samuel are students there now. Everyone knows Samuel and have been so supportive of our family. We are sharing this so maybe others could do this in their community.
♥ March 5, 2013 Giuliana’s Gift of Life – A Trisomy 18 Blog Giuliana lives with Trisomy 18 (Edwards Syndrome). Her mother Jill has a beautiful blog sharing the many aspects of daily life and resources needed with this trisomy experience.
♥ Rebekah Faith – Redefining ‘Incompatible with Life’: Trisomy Awareness Shares Living with Triosmy 18 – Edwards Syndrome – Helping Families with Prenatal and Postnatal Diagnosis of Trisomy 18, 13 and Related Chromosome Disorders, Dealing with Ethics, Genetics, and Related Medical and Health Issues
♥ TRIsoMY Favorite Things Sharing the health and development living with full trisomy 13. Celebrating 2013 and her 13th year of life!♥ March 4, 2013 Trisomy 18 or 13 Growth Charts Bonnie Baty, PhD, Genetic Counselor at the University of Utah, in collaboration with SOFT, created the first, and still only, charts with growth curves for infants and children with trisomy 18 and 13.♥ Trisomy Tea Fundraising Idea - Raising Trisomy13/18 Awareness one Cup at a Time.♥ Faces of Trisomy Jude Wolpert photographed this series of portraits at the SOFT (Support for Families with Trisomy 18, 13 and Related Disorders) conference in Roanoke, Virginia during July 2009.
♥ March 3, 2013 Sci Technol Journal of Genetic Disorders & Genetic Reports – Abstract
Erring on the Side of Life: Children with Rare Trisomy Conditions, Medical Interventions and Quality of Life
Corresponding author : Deborah A. Bruns, Department of Educational Psychology and Special Education,
♥ Also see TRIS PROJECT Survey Results
♥ Facebook Pages Highlighting Trisomy Awareness 2013♥ Trisomy Talk’s 2013 Trisomy Awareness Banners ♥ SOFT’s Trisomy Awareness Month – March 2013 ♥ Hope for Trisomy’s TRI~ KID Journeys
♥ March 3, 2013 SOFT website Facebook Page is Sharing your Trisomy Related website, blog, photo gallery or facebook page for your family child or organization.
♥ Meet Gabby – Living with Trisomy 14 Mosaic: High Point 10-year old to compete in Miss Amazing NC pageant (VIDEO) ♥ Peter Kellett and Trisomy 18: Part One According to a National Institutes of Health Website, Trisomy 18 is a genetic disorder “in which a person has a third copy of material from…♥ Peter Kellett and Trisomy 18: Part Two
♥ The Tracking Rare Incidense Syndrome (TRIS) Project: What It Is and What It Is Not. ♥ Giving a Face to Trisomy 18: Debbie Elaborates on this Rare Condition
