Start Genetic is a movement dedicated to increasing awareness and understanding of genetic testing and genetic conditions. Our mission is to empower patients and healthcare providers to think genetic first for the answers they need to move forward.

Start with genetic testing. Start getting answers.

What is Start Genetic?

Empowering knowledge, driving action

We’re parents. We’re providers. We’ve been where you are. And we created Start Genetic so others wouldn’t have to go at it alone. 

Start Genetic is an initiative built from the personal experience of parents to accelerate diagnosis, treatment, and better health outcomes for everyone affected by genetic disorders. 

Healthcare professional examining an infant during a pediatric visit, representing the importance of early diagnosis and genetic testing for children.

Our Story & Purpose

Start Genetic is on a mission to empower individuals to access genetic testing and unlock understanding, community, and a way forward. Navigating care can feel isolating. Genetic testing is the antidote: shortening the diagnostic odyssey; connecting individuals to other families, experts, and trusted resources; and expanding care pathways for patients and their families.

  • Parent embracing a young child, representing family support throughout the genetic testing and diagnostic journey.

    Who we are: a collaborative force

    Start Genetic was born from the vision and dedication of patient advocates and genetics professionals who share a core belief: everyone with a genetic condition has the right to access genetic testing and receive an accurate and timely diagnosis.

    This knowledge is crucial for improving care, management, and overall well-being. We are committed to bridging the gap between the latest advancements in genetic testing and the individuals and families who can benefit from them.

  • A young female doctor with a stethoscope talking to a mother holding a baby in a medical office.

    Our mission: empowering you to move forward

    Our goals are to:

    • Encourage and normalize conversations around genetic testing and genetic disorders, creating a more open and supportive environment

    • Educate the public about what genetic testing is and the impact it can have

    • Reduce stigma around genetic testing

    • Drive action, empowering people to confidently and proactively ask healthcare providers about genetic testing when facing unexplained symptoms or conditions

    • Make genetic testing easy to understand and accessible to everyone

    • Grow and strengthen genetic disease communities, fostering connection and support

Parent sharing an affectionate moment with their child, representing family support and the benefits of genetic testing for earlier diagnosis.

“Getting a genetic diagnosis for our daughter brought so much peace. It lifted the weight of guilt and gave us a sense of direction—plus, we found a community that truly understands.”

Haley (left) & Lori (right). Haley is living with Phelan-McDermid syndrome (PMS)

Our Advisors

Start Genetic’s advisors include patient advocates, genetic professionals, researchers, and clinicians from leading institutions.

  • Emily Amerson

    CTNNB1 Connect & Cure

  • Wunmi Bakare

    ThroughTheGenes Podcast

  • Jenny Graham Beeson

    CureSHANK

  • Terry Jo Bichell

    COMBINEDBrain

  • Geraldine Bliss

    CureSHANK

  • Wendy Chung

    Boston Children’s Hospital

  • Gabi Conecker

    DEEP Connections

  • Ingo Helbig

    Children’s Hospital of Philadelphia

  • Misia Kowanda

    Simons Searchlight

  • David Ledbetter

    Florida State University Medical College

  • Abby Lievense

    CureSHANK

  • Pilar Magoulas

    Baylor College of Medicine

  • Christa Lese Martin

    Geisinger

  • Effie Parks

    Once Upon A Gene

  • Katy Phelan

    Florida Cancer Specialists

  • Maria Picone

    TREND Community

  • Charlene Son Rigby

    Global Genes

  • Erin Rooney Riggs

    Geisinger

  • Elizabeth Rountree

    COMBINEDBrain/Project FIND-OUT

  • Talya Emery Silva

    CureSHANK

  • Sid Srivastava

    Boston Children’s Hospital

  • Ashley Swift

    CTNNB1 Connect & Cure

  • Jennifer Tjernagel

    Simons Searchlight

  • Judith Ursitti

    Profound Autism Alliance

  • Alycia Halladay

    Autism Science Foundation

Interested in joining in this work?

Get in touch