About Sandra Sermone

Sandra founded ADNPkids.com in 2015 after her son was the first child diagnosed in the US, 11th in the world with ADNP. At the same time she created the worlds only ADNP parent support group on Facebook, where families could connect, share information and no long feel alone. This ADNP family tribe has brought together families from across the globe to build a strong ADNP community.

Little science or research existed in 2015 so Sandra began her own independent research projects. She then founded the ADNP Kids Research Foundation in 2016 to accelerate research and find cures for all children living with ADNP and those that will follow. She acts as the President, CEO and Primary Investigator for the ADNP Contact Registry.

Sandra discovered the first biomarker for ADNP Syndrome and co-discovered the first viable drug treatment for her son and others with ADNP Syndrome. The Phase 2 FDA study was fully funded through the ADNP Kids Research Foundation and to date, is believed to be the first rare disease in US history to start an FDA drug trial using artificial intelligence.

Some of her co-authored scientific publications have been published in Nature Translational Psychiatry, The Journal of Molecular Neuroscience and Frontiers in Endocrinology.

ADNP Syndrome is an extremely rare single gene neurodevelopmental genetic disorder caused by a non-hereditary mutation in the ADNP gene.

ADNP Syndrome can cause problems with almost any system or organ of the body (www.adnpfoundation.org)
ADNP is one of the top single gene causes of autism Autism Spectrum Disorder (ASD) and is estimated to cause 0.2% of all ASD cases, making it an important gene in autism research.

In addition, the ADNP gene is the only protein significantly decreasing in the serum of Alzheimer’s disease (AD) and dysregulated in both AD and Schizophrenia. Treatments for ADNP could lead to treating these much larger diseases.

“I am active seeking to build our international research network and donors to find treatments and cures to save my son and all individuals who suffer from this incurable disease.”