Trisomy Awareness Month · Trisomy 18: Edwards Syndrome · E.WE Foundation · Trisomy.org
For many years, families were in the dark about Trisomy 18 and what it meant for their child when learning of the diagnosis for the first time in pregnancy or shortly after birth, but we’ve worked tirelessly to answer their questions and companion them on this difficult journey. Today we are the leading resource for accurate, balanced and up-to-date information for newly-diagnosed patients and their families, as well as health professionals and researchers.
If you or someone you love is impacted by a diagnosis of Trisomy 18 or a related disorder, we offer easy-to-understand materials to help you on your medical journey. If you are a doctor or other healthcare provider, we have resources for your office, patient education tools and up-to-date management overviews. If you are a researcher, we offer vehicles to help you to advance knowledge on Trisomy 18 and related disorders on a cellular level that could translate to treatments improving survival in the first year of life and preventing the meiotic errors causing Trisomy 18.
A chromosome disorder is caused by an alteration in the number or genetic structure of chromosomes. Trisomy (‘three bodies’) means the affected person has 47 chromosomes instead of 46. Down syndrome, Edward syndrome and Patau syndrome are the most common forms of trisomy. Children affected by trisomy usually have a range of birth defects, including delayed development and intellectual disabilities.
Every March our SOFT community celebrates Trisomy Awareness Month. March is the 3rd month of the year so it seems fitting that it would be the month chosen to bring awareness and education to 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 is not simply what a Trisomy is and how it can affect our children. The message we share and celebrate is how loved our children are regardless of how long they are with us. We show how much a vital part of our families they are; what sweet, loving, vibrant individuals they are; and what a hole is left in our hearts and families when we have to say goodbye.
To help families create awareness, SOFT has designed some items to help you. Reach out to your medical professionals, schools and communities to educate let them know that your child is not just a condition or a label. We are Trisomy Strong.