New Movement Launches Genetic Testing Action Day on July 25 to Shorten Diagnostic Delays
CureSHANK, a research advocacy organization dedicated to individuals with a rare genetic condition, today launches Start Genetic, a national movement encouraging genetic testing as a critical first step for families with children experiencing neurodevelopmental delays or unanswered health concerns. This movement comes on the heels of a groundbreaking milestone in gene editing: the first documented cure of an infant with an incurable genetic condition, as reported in the New England Journal of Medicine. With renewed hope from this breakthrough, Start Genetic is mobilizing families with Genetic Testing Action Day on July 25, 2025. The movement's mission is to educate, empower, and encourage parents to meet with their child's pediatrician about genetic testing to accelerate accurate diagnoses and access novel therapies.
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Approximately one in six children in the United States has a developmental disorder diagnosis, and 40 percent may also have a genetic condition. The average genetic diagnostic journey is six years, which can postpone essential care and limit access to emerging treatments. Genetic testing can change this story.
“Genetic testing is the fastest path to ensuring children with genetic conditions have access to groundbreaking therapeutic approaches, such as gene editing,” said Geraldine Bliss, president and co-founder of CureSHANK. “Through the Start Genetic movement, we aim to close the awareness gap with Genetic Testing Action Day on July 25, and by equipping parents with resources, including the Start Genetic Parent Toolkit, to encourage proactive discussions with their child's pediatrician.”
The movement urges families to visit StartGenetic.org to:
— Learn more about genetic testing and who it may help
— Download the Start Genetic Parent Toolkit
— Speak with their child's pediatrician about testing options
“Every child deserves the best possible chance at a healthy future,” said Siddharth Srivastava, MD, child neurologist at Boston Children's Hospital, associate professor of neurology, Harvard Medical School, and advisor to Start Genetic. “For many families, that future starts with answers-and those answers oftenbegin with genetic testing. Early diagnosis of rare genetic conditions has life-changing potential through improved clinical care, clinical trial options, community support, and ultimately, personalized treatments.”
As a research advocacy organization focused on a rare genetic disease, CureSHANK initiated and organized the Start Genetic movement. The movement is supported by hundreds of other rare disease organizations and sponsors, including GeneDX® and Genome Medical®.
To learn more about Start Genetic, visit StartGenetic.org and join our communities on Instagram, Facebook,Bluesky, LinkedIn, TikTok,X,andYouTube.
About CureSHANK
CureSHANK is a 501(c)(3) nonprofit organization, accelerating drug development for Phelan-McDermid Syndrome. Founded in 2019 by Geraldine Bliss, Abby Lievense, and Paulina Rychenkova, parents of children living with PMS, CureSHANK identifies and funds projects that overcome critical barriers to successful drug development and coordinates scientific efforts to improve efficiency and speed in the field. To learn more, visit www.CureSHANK.org.
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SOURCE CureSHANK
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