Sandra Bedrosian-Sermone
Founder & President, ADNP Kids Research Foundation
Founder, ADNPkids.com
Email:
Sandra founded ADNP Kids Research Foundation in May of 2015 and acts as the President and Executive Director of the corporation. Her son Tony (aka-Superman) was the first child diagnosed in the US after the discovery of the syndrome. At that time, only one small medical publication existed. The syndrome had no name, there was no place to find support, or connect with other families, no medical protocol, no treatments or cure and no information for her to understand what this diagnosis meant for her child. Shortly after her sons diagnosis, she launched the ADNPkids Parent Support Page on Facebook with the goal of helping and connecting other families affected by ADNP Syndrome. Since no informative website existed, she created ADNPkids.com, which has become a tool for families and diagnosing physicians around the world to review current and relevant statistic data on the syndrome, as well as a place to find information on the ADNP community as a whole. She began collaboration with medical researchers around the world and began a very important parent/patient generated research project. She built her own patient registry, and to-date has the largest collection of diagnosed patients in the world. In early 2015, Sandra discovered premature tooth eruption as a early diagnosis biomarker. She convinced a European research team (Gozes, Kooy, Dijck) to investigate and for the first time every, primary teething is associated with the ADNP related autistic disorder, providing for simple diagnosis and paving the path to early intervention. Sandra is a huge proponent for early diagnosis so that children can begin aggressive early specialized therapy plans which she believes will improve the long-term outcome of the child. Sandra pushes to advocate for better medical protocol and care, individualized special education and rare disease legislation. In April of 2016, Sandra was sent to Washington to DC to speak to members of Congress about the difficulties of obtaining genetic testing for rare undiagnosed genetic syndromes in children. She has several published papers and wants to continue bringing awareness to ADNP Syndrome. Her latest project is working to create an ADNP-Kids Clinic, where children with this syndrome can go for full medical care.
Founder & President, ADNP Kids Research Foundation
Founder, ADNPkids.com
Email:
Sandra founded ADNP Kids Research Foundation in May of 2015 and acts as the President and Executive Director of the corporation. Her son Tony (aka-Superman) was the first child diagnosed in the US after the discovery of the syndrome. At that time, only one small medical publication existed. The syndrome had no name, there was no place to find support, or connect with other families, no medical protocol, no treatments or cure and no information for her to understand what this diagnosis meant for her child. Shortly after her sons diagnosis, she launched the ADNPkids Parent Support Page on Facebook with the goal of helping and connecting other families affected by ADNP Syndrome. Since no informative website existed, she created ADNPkids.com, which has become a tool for families and diagnosing physicians around the world to review current and relevant statistic data on the syndrome, as well as a place to find information on the ADNP community as a whole. She began collaboration with medical researchers around the world and began a very important parent/patient generated research project. She built her own patient registry, and to-date has the largest collection of diagnosed patients in the world. In early 2015, Sandra discovered premature tooth eruption as a early diagnosis biomarker. She convinced a European research team (Gozes, Kooy, Dijck) to investigate and for the first time every, primary teething is associated with the ADNP related autistic disorder, providing for simple diagnosis and paving the path to early intervention. Sandra is a huge proponent for early diagnosis so that children can begin aggressive early specialized therapy plans which she believes will improve the long-term outcome of the child. Sandra pushes to advocate for better medical protocol and care, individualized special education and rare disease legislation. In April of 2016, Sandra was sent to Washington to DC to speak to members of Congress about the difficulties of obtaining genetic testing for rare undiagnosed genetic syndromes in children. She has several published papers and wants to continue bringing awareness to ADNP Syndrome. Her latest project is working to create an ADNP-Kids Clinic, where children with this syndrome can go for full medical care.
SANDRA'S PUBLICATIONS
UNEXPECTED INNOVATIVE EARLY DIAGNOSIS IN AUTISM SPECTRUM DISORDER: PREMATURE PRIMARY TOOTH ERUPTION IN ADNP-MUTATED CHILDREN
Published in Translational Psychiatry
Published in Translational Psychiatry
THE COMPASSIONATE SIDE OF NEUROSCIENCE: TONY SERMONE'S UNDIAGNOSED GENETIC JOURNEY - ADNP MUTATION
Published in the Journal of Molecular Neuroscience
Published in the Journal of Molecular Neuroscience
ADNP - THE MEDICAL ODYSSEY OF A UNDIAGNOSED CHILD
Published in Tel Aviv University Newsroom
Published in Tel Aviv University Newsroom
LOCAL MOTHER'S QUEST TO DEFEND PRECISION MEDICINE
Published in The Oregonian - OregonLive
Published in The Oregonian - OregonLive
A MOTHER'S QUEST TO UNRAVEL A MYSTERY AND PUSH RESEARCH FORWARD - A FIGHT FOR TONY
Published in IAN - Interactive Autism Network
Published in IAN - Interactive Autism Network
WHY MY SON WITH ADNP SYNDROME IS JUST LIKE SUPERMAN
The Mighty.com
The Mighty.com
