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CureSHANK's Start Genetic Initiative: A Call to Action for Families

In an effort to empower families dealing with neurodevelopmental challenges, CureSHANK has launched a national movement called Start Genetic. This initiative aims to encourage genetic testing as a crucial first step for parents whose children are facing unexplained health issues or developmental delays. With the excitement surrounding recent advancements in gene editing, including the historic cure for an infant with a previously untreatable genetic condition, the time for action has arrived.

Scheduled for July 25, 2025, the Genetic Testing Action Day will serve as a pivotal moment for families across the United States. Currently, about one in six children is diagnosed with a developmental disorder, 40% of whom may also carry genetic conditions. Unfortunately, the average journey to receive a genetic diagnosis can span six years, delaying necessary care and reducing opportunities for cutting-edge treatments. CureSHANK emphasizes that prompt genetic testing can dramatically shift this narrative.

"Genetic testing is the fastest path to ensuring children with genetic conditions have access to groundbreaking therapeutic approaches, such as gene editing," states Geraldine Bliss, president and co-founder of CureSHANK.

The Start Genetic movement is working to bridge the awareness gap surrounding genetic testing, providing parents with essential resources like the Start Genetic Parent Toolkit. This toolkit is designed to facilitate conversations between parents and their child's pediatricians about the potential benefits and options of genetic testing.

Parents interested in this initiative can visit their website, StartGenetic.org, where they can learn more about the importance of genetic testing and download the Parent Toolkit. They can also engage in proactive discussions with their child's healthcare providers about testing options available to them.

Dr. Siddharth Srivastava, a child neurologist at Boston Children's Hospital and an advocate for the Start Genetic initiative, emphasizes, "Every child deserves the best possible chance at a healthy future. For many families, that future begins with answers – and those answers often start with genetic testing. Early diagnosis of rare genetic conditions has the potential to transform lives through improved clinical care, access to clinical trials, community support, and ultimately, personalized treatments."

As a research advocacy organization focused on a rare genetic disease, CureSHANK is spearheading this movement while also enjoying support from numerous other rare disease organizations and partners, including notable names like GeneDX® and Genome Medical®.

This groundbreaking initiative not only aims to increase awareness and understanding of genetic conditions but also to rally support from parents and healthcare professionals alike to prioritize genetic testing as an essential step in the diagnostic process. Through their collective efforts, CureSHANK hopes to accelerate the journey toward accurate diagnoses and novel therapeutic options for children in need.

The ongoing discussions and resources provided by CureSHANK highlight a promising future for families affected by genetic conditions. This movement denotes a critical step forward – one that underscores the importance of understanding genetic influences on health as more families are urged to Start Genetic.

To learn more and join the movement, families are encouraged to visit StartGenetic.org. Here, they can connect with a community dedicated to fostering awareness, understanding, and action regarding genetic conditions, paving the way for a brighter future for countless children facing neurodevelopmental challenges.

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For more information, visit CureSHANK at www.CureSHANK.org.