Many of you are aware that World Down Syndrome Day is fast approaching–in fact it is just two days away! March 21, 2014 (3-21, remember? Of course you do.) My actual post for World Down Syndrome Day will go up on Friday. Today’s post is about a brand new organization spreading its wings and taking off in flight on World Down Syndrome Day. I am talking about the Down Syndrome Diagnosis Network (DSDN). The significance of its birth date obviously speaks for itself.
What is the Down Syndrome Diagnosis Network? The Down Syndrome Diagnosis Network is an organization appealing to parents and families receiving a prenatal or at-birth Down syndrome diagnosis.
How will this organization help those receiving a diagnosis? How won’t they, really? They will provide the most current and accurate information and resources about Down syndrome, give appropriate feedback to physicians and connect families alike.
Let’s face it. We live in a world of mixed medical personnel, with many years separating the eldest practicing physicians and the newest. With that comes a steaming combination of biased and outdated sterotypes, compelling research and deep-rooted love and compassion for the same subject. Whoa! Parents may find themselves blind sighted by the poor delivery of a diagnosis or pleasantly surprised (as we were) by a physician who opens their heart and shows a family where to begin. How parents learn of a Down syndrome diagnosis is critical. Why? Because their baby is more than a diagnosis. Their baby matters. Everyone deserves respect and compassion. Everyone deserves a solid place to start.
The DSDN will be there from the beginning carrying out their mission:
“The Down Syndrome Diagnosis Network
(DSDN) supports families with current
information and real-life accounts of life
with Down syndrome during the prenatal,
newborn, and early childhood phases.
The DSDN is committed to creating unbiased,
family-centered discussion of Down
syndrome with the medical community in
order to cultivate a culture of acceptance and
inclusion for those with Down syndrome at
all stages of life.”
Because the founders of the DSDN have been there. What’s more is that no matter how a diagnosis is delivered, with the DSDN no family will ever be alone from that moment on.
The DSDN will properly serve families while focusing on their three core fundamentals:
- Support new and expectant parents
- Provide feedback and resources (for families and physicians)
- Connect parents
I had the pleasure of speaking with the President of the DSDN yesterday. Although I have never met her I can tell that she is going to make this a firm platform for those just entering the Down syndrome community, where it is definitely needed. She e-mailed me their brochure that provided me with some additional information about their new baby. I told her I would not share too many goodies ahead of their launch, but it was hard to say so little about something that I know will greatly impact current and future families.
I ask that you join them this Friday, March 21, 2014 in celebrating the launch of the Down Syndrome Diagnosis Network. Please visit them on Facebook and Twitter @TheDSDN. Check out their website at dsdiagnosisnetwork.org. Wish them well and thank them. I know that I am excited to watch them fly!
Best wishes Down Syndrome Diagnosis Network! Thank you for your devotion!