So How Do We Do this?
There Are Three Main Groups That We Help
Parents whose child has received a Down syndrome diagnosis
When a new parent receives a Down syndrome diagnosis for their
child, they experience many emotions; fear, uncertainty, worry, disappointment, among others. We believe if a new parent can talk with someone who has a child born with Down syndrome, and hear their family’s story, that story can replace many of those feelings with hope. Just having someone who can say “I understand” and “You’re not along” can bring comfort. We want to connect every parent who’s child is diagnosed with Down syndrome to a family raising a child with Down syndrome. We believe a little bit of hope can go a long way.
Parents Who Have a Child With Down Syndrome
A parent of a child born with Down syndrome has a unique story, and that story has the potential to bring hope to a parent whose child has recently received a Down syndrome diagnosis. Our desire is that every parent in the United States whose child receives a Down syndrome diagnosis can connect with a parent of a child with Down syndrome who is a little further down along in their story.
We do this by signing up Hope Advocates. A Hope Advocate receives a “Hope Kit” in the mail with a lots of really great resources. One of these resources are customized “Hope Announcements” that Hope Advocates can give to their medical professional as well as “Hope Advocate Cads” that their medical professional can give to their patients.
We also provide ongoing training to a parents to help equip them to have a phone call with a parent whose just receiving a diagnosis for their child.
We want to help parents raising learn to tell their story, then help them ﬁnd opportunities to do so.
Medical professionals don’t receive speciﬁc training in medial school on how to deliver a Down syndrome dialogs, and it isn’t something they do everyday. In addition, most medical professionals don’t have a personal relationship with anyone with Down syndrome.
We solve both of these problems.
1. We provide free resources to medical professionals to help them deliver a Down syndrome diagnosis, with the best resource being a Hope Advocate. A Hope Advocate is a parent of a child with Down syndrome that is equipped to talk to parents whose child has just received a Down syndrome diagnosis. Medical professionals can give their patients the Hope Advocate’s contact information so that they can connect with a family a little further down the road.
2. Each year a Hope Advocate will bring to their medical OB/GYN a personalized “Hope Announcement” to help them get to know someone with Down syndrome on a personal leve.