The Road We’ve Shared envisions a world where adults who have Down syndrome have access to the supports they need and deserve in order to live a life that is safe, fulfilling, appreciated, and designed according to their individual strengths and wishes.


The mission of The Road We’ve Shared is to provide the opportunity and means for parents and caregivers of adults who have Down syndrome to connect, share, and learn about issues that affect their lives.


The Road We’ve Shared is built firmly on the concept of mutual respect for all viewpoints. We value the lives and individuality of adults who have Down syndrome and we will show the same respect for each other and the different paths we choose while we support our loved ones.  This community is dedicated to the memory and legacy of Ethan Saylor.  No one will be discriminated against for any reason including position in life, religious or political beliefs, or cultural perspective.


Creating a Narrative:

Each of us has a story to tell.  By providing a safe place to share our stories with others who understand our trials and triumphs, we empower each other and allow each individual voice to be heard.  We also create a history of our experiences for others to learn from.

Sharing and Supporting:

We provide and maintain a place to share pictures and videos of our children that is free from judgement.

Facilitating Discussions:

The Road We’ve Shared will use different media to help parents and caregivers to communicate with each other.  These venues will include online forums, written blog posts and statements, online and interactive radio interviews, and video chats.

Connecting to Professionals:

Our goal is to provide access for parents to discuss issues with experts including doctors, lawyers and policy makers who have influence on our individual lives.  We will work with other national groups such as the IDSC, NDSC, NDSS, and the Global Down Syndrome Foundation whenever our goals overlap to enhance the benefit for parents and caregivers of adults.


We collect and disseminate news that is important to parents and caregivers of adults who have Down syndrome.  Our weekly newsletter provides access to stories and events from all over the world.


We support efforts to create change that affects adults who have intellectual and developmental disabilities.


Founder – Stephanie Holland (The Big Picture)

  • Weekly Newsletter
  • Scheduling Radio Shows
  • Planning
  • Book Club

Mardra Sikora – (Writing / Marketing / Management)
Marianne Marts – (Professional Advocacy / Sibling Issues)