Hope Story is a team of medical professionals and storytellers. We believe that stories have the ability to provide hope to others and change the world. At our core, we exist to help people learn to tell their stories and help them ﬁnd opportunities to share them with people that need to hear them the most.
We help medical professionals deliver hopeful stories to their patients. We help parents raising children with Down syndrome leverage their unique story to bring hope to parents whose child has received a Down syndrome diagnosis. We connect parents whose child has received a new Down syndrome diagnosis to parents who have a child with Down syndrome so that they can receive, encouragement, support, and hope.
We believe a little bit of hope can go a long way.
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 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 alone” can bring comfort. We want to connect every parent whose child is diagnosed with Down syndrome to a family raising a child with Down syndrome.
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 Contact Cards” that their medical professional can give to their patients.
We also provide ongoing training to a parents to help equip them to connect with a parent whose child just recieved a Down syndrome diagnosis.
Many medical professionals do not receive specific training in medical school on how to deliver a Down syndrome diagnosis, and it isn’t something they do everyday. In addition, most medical professionals do not 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 who is trained to talk with them.
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 level.
Who We Are
Medical Advisory Board
Our medical advisory board reviews and provides feedback on resources produced by Hope Story to ensure medical accuracy, and excellence.
MATT SIMON, MD
Parent Advisory Board
The parent, advisory board, reviews and provides feedback on resources produced by Hope Story to ensure that they give hope to parents receiving a Down syndrome diagnosis.