Sandra Sermone
FOUNDER, CEO, PRESIDENT, PRINICIPAL INVESTIGATOR 

Sandra's full story of why she created the foundation when her son Tony was diagnosed can be found at "ABOUT US / OUR STORY" on this website.
Sandra founded ADNPkids.com in 2015 after finding out that her son had a rare ADNP mutation and at the time was 6 years old and the 1st patient diagnosed in the US, 11th in the world following the discovery of the disorder just months prior in 2014. Sandra says “there where no doctors who understood it, no where to take him, and worst of all no treatments or cure; so no one was looking for a way to help my son who was living with this debilitating degenerative brain disease so I decided that 'no' was not an option and created the ADNP Kids Research Foundation find and fund treatments and cures myself because I was all he had”.

In 2016 Sandra founded the ADNP Kids Research Foundation, a Washington State 501(c)3 dedicated to helping children around the world with ADNP syndrome.

RESEARCH:
Sandra works in collaboration with medical researchers around the world and began a parent/patient generated research project where she built her own private database prior to starting the foundation, and to-date has the largest collection of diagnosed patients in the world. Sandra is the Principal Investigator for the International ADNP Patient Registry and Contact Registry.  She now works closely with some of the best research facilities in the world in genetics, autism and the brain. Using findings from her own research, In early 2015, she discovered 'premature tooth eruption' as a early diagnostic biomarker. She collaborated with a European research team (Gozes, Kooy, Dijck) to investigate and for the first time, this biomarker was proven to be associated with the ADNP related autistic disorder. This biomarker is not seen in any other syndrome in the world, making it unique to ADNP.  Because of her research, Sandra has co-authored several medical publications (PUBMED and/or ResearchGate) with a 6th currently in peer review.  Sandra has been involved with ADNP syndrome drug development since 2018, when she first attended an FDA PRE-IND meeting for a potential treatment for ADNP. In 2019, Sandra, along with two other rare disease father's, identified, researched, hypothesized and presented a repurposed drug that they felt could be therapeutic for ADNP Syndrome. A team at Mount Sinai agreed it looked viable, moved forward and in less than a year, began the first ever FDA clinical drug trial for ADNP Syndrome.

Sandra additionally serves with the following organizations:
  • AUTISM SPEAKS - Legislative Advocacy Ambassador
  • SPARK FOR AUTISM (Simons Foundation) - Community Advisory Committee Member
  • ​NATIONAL ORGANIZATION OF RARE DISORDERS (NORD) - Washington State Co-Ambassador
  • COMBINED BRAIN - Board Member
  • AGENDA - AUTSIM/NDD - Member
  • NATIONAL COUNSIL ON SEVERE AUTISM - Member
  • ADNP INTERNATIONAL CONSORTIUM - Member
  • GLOBAL GENES FOUNDATION ALLIANCE - Member
  • EVERYLIFE FOUNDATION COMMUNITY CONGRESS - Member
SANDRA'S ARTICLES, NEWS AND PUBLICATIONS
NATIONAL NEWS STORIES CURRENT NEWS ​NEWS STORIES AND *PUBLICATIONS TO READ HER ADNP MOMMY BLOG, CLICK HERE!
I was told 3 things by doctors that will stick with me forever.  
  • a diagnosis won't change anything
  • there would NEVER be a treatment for a this type of brain disorder
  • if there was, it would never come in his lifetime. 
They were wrong!   Tony's diagnosis is the reason ADNP Kids Research Foundation exists, so it changed everything, we have found a treatment for his rare brain disorder that is showing very promising results clearing our phase 2 FDA drug trial and he is 13 years old, so we did do this in his lifetime!   They were so wrong!​
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Disclosure: This page represents information known to the best of our knowledge.  Given the sensitivity and fast changing pace of research and drug development, some of the information posted on our website www.adnpfoundation.org may be inaccurate or not complete, therefor this information should be confirmed by the reader. Additionally, the medical information on this website is not substitute for personal diagnosis or medical care advise. Families and patients should consult a medically qualified clinician in all matters relating to genetic diagnosis, disease management and health. Information on ADNP research is a very fast-moving field and while the information here is believed to be the best available at the time of publication, some facts may later be updated or change. Please see additional disclosures on our PRIVACY POLICY page.