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Start Genetic
Why genetic testing
Who it can help
Get started
For patients and families
For healthcare professionals
About
Get Updates
Start Genetic
Why genetic testing
Who it can help
Get started
For patients and families
For healthcare professionals
About
Get Updates
Why genetic testing
Who it can help
Get started
For patients and families
For healthcare professionals
About
Get Updates

Get updates

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11777 San Vicente Blvd, Suite 500
Los Angeles, CA 90049

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Start Genetic is an initiative of CureSHANK, a 501(c)(3) California-based Nonprofit Public Benefit Corporation EIN: 84-2240648

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Benefits of genetic testing

Genetic testing can empower you with information you can act on.

Know your diagnosis

Genetic tests can find the genetic reason for health or developmental challenges. This helps your doctors identify related problems early and manage them better.

Guide your care

Understanding your genetic diagnosis helps doctors recommend treatments and medicines that work best for you. It can also give you a better idea of what your health might be like in the future.

Access vital support

A genetic diagnosis can help you connect with disease-specific clinical trials, research studies, and community and support resources.

Inform future planning

Genetic testing can help you learn about health traits that run in your family.

Genetic testing may be right for you

Who should consider genetic testing?

Genetic testing is often recommended for:

  • Babies and kids who are very ill in the hospital, such as in the NICU or PICU
  • People who have two or more of the following:
    • Trouble eating or feeding
    • Problems moving or involuntary movements
    • Trouble seeing
    • Growth that’s much slower or faster than that of other kids: height, weight, or head size is way below or way above average
    • Muscles that are too stiff or too floppy
  • People who experience:
    • Autism
    • Delayed learning or development
    • Seizures
    • Birth defects such as a hole in the heart, or extra fingers and toes

Previously tested? New advances mean new possibilities.

If the above sounds like you or your child, it’s a good idea to discuss genetic testing with your doctor—even if you’ve had testing done before. The science of genetics is always advancing, and newer tests may identify genetic changes that older tests couldn’t. Talking with your doctor or a genetic counselor can help you decide if updated testing may help.

Diagnosed and still seeking answers?

Even if you’ve already been diagnosed with a condition, genetic testing can still help to:

  • Explain the exact genetic reason behind your health challenges
  • Allow your healthcare team to create a personalized treatment plan for you
  • Find medicines specifically created for your condition
  • Connect you with a community of people sharing similar experiences

Start Genetic’s story and purpose

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.

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 profound impact it can have
  • Reduce stigma around genetic testing
  • Drive action, empowering people to confidently and proactively ask their or their child’s 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

Why July 25 for Genetic Testing Action Day?

Genetic Testing Action Day is observed each year on July 25—the birthday of Rosalind Franklin, PhD, (1920-1958). A scientist at King’s College London in 1952, Dr. Franklin’s groundbreaking contributions, including “Photograph 51,” forever changed our understanding of DNA and laid the foundation for the incredible advances in genomics and medicine we see today.

Start Genetic’s advisors

Name Affiliation
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
Alycia Halladay Alliance of Genetic Etiologies of Neurodevelopmental Disorders and Autism 
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