Sandra Bedrosian Sermone
Founder & President, ADNP Kids Research Foundation
Founder, ADNPkids.com
Email: sandra@adnpfoundation.org
Linked In: sandra bedrosian sermone
Sandra founded ADNPkids.com in 2015 and the ADNP Kids Research Foundation (IRS accredited 501(c)3 nonprofit) in 2016 and acts as the Chief Executive Officer and Board President for the foundation.
Sandra serves with the following organizations.
Several of her co-authored scientific publications include Nature Translational Psychiatry, The Journal of Molecular Neuroscience and Frontiers in Endocrinology.
ADNP
In 2014, Sandra's son was the first child in the US diagnosed (Duke University) with a de novo mutation on his ADNP gene just months after the discovery of the ASD-related syndrome. At that time the genetic disorder had NO name, NO support, NO medical protocol, NO information, NO way to connect with other families, NO treatment and NO cure.
In 2015, Sandra created ADNPkids.com, the worlds first ADNP syndrome informational website. She began her own research project and soon after launched the worlds 1st ADNP parent group via Facebook with the goal of helping and connecting other families affected by ADNP syndrome. In 2016 she founded the ADNP Kids Research Foundation (accredited 501(c)3 nonprofit)
Sandra works in collaboration with medical researchers around the world and began a parent/patient generated research project where she built her own patient registry, and to-date has the largest collection of diagnosed patients in the world.
Using findings from her research, In early 2015, she discovered 'premature tooth eruption' as a early diagnostic biomarker. She convinced a 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.
She has several published papers (PUBMED) and wants to continue bringing awareness to ADNP Syndrome and to FIND RESEARCHERS INTERESTED IN INVESTIGATING ADNP SYNDROME for better understanding and treatment discovery.
Sandra pushes to advocate for better medical protocol and care, individualized special education and legislation topics that effect those living with rare diseases such as ADNP.
In April of 2016, Sandra was sent to Washington to DC to speak to members of Congress about the difficulties of obtaining genetic testing (LDT's/WES) for rare undiagnosed genetic syndromes in children and the importance to precision medicine.
Founder & President, ADNP Kids Research Foundation
Founder, ADNPkids.com
Email: sandra@adnpfoundation.org
Linked In: sandra bedrosian sermone
Sandra founded ADNPkids.com in 2015 and the ADNP Kids Research Foundation (IRS accredited 501(c)3 nonprofit) in 2016 and acts as the Chief Executive Officer and Board President for the foundation.
Sandra serves with the following organizations.
- National Organization of Rare Disorders (NORD) RAN Washington State Co-Ambassador
- Autism Speaks Legislative Advocacy Ambassador
- SPARK for Autism (Simons Foundation) Community Advisory Committee
- International Society for Autism Research member
- ADNP International Consortium member
- Global Genes Foundation Alliance member
Several of her co-authored scientific publications include Nature Translational Psychiatry, The Journal of Molecular Neuroscience and Frontiers in Endocrinology.
ADNP
In 2014, Sandra's son was the first child in the US diagnosed (Duke University) with a de novo mutation on his ADNP gene just months after the discovery of the ASD-related syndrome. At that time the genetic disorder had NO name, NO support, NO medical protocol, NO information, NO way to connect with other families, NO treatment and NO cure.
In 2015, Sandra created ADNPkids.com, the worlds first ADNP syndrome informational website. She began her own research project and soon after launched the worlds 1st ADNP parent group via Facebook with the goal of helping and connecting other families affected by ADNP syndrome. In 2016 she founded the ADNP Kids Research Foundation (accredited 501(c)3 nonprofit)
Sandra works in collaboration with medical researchers around the world and began a parent/patient generated research project where she built her own patient registry, and to-date has the largest collection of diagnosed patients in the world.
Using findings from her research, In early 2015, she discovered 'premature tooth eruption' as a early diagnostic biomarker. She convinced a 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.
She has several published papers (PUBMED) and wants to continue bringing awareness to ADNP Syndrome and to FIND RESEARCHERS INTERESTED IN INVESTIGATING ADNP SYNDROME for better understanding and treatment discovery.
Sandra pushes to advocate for better medical protocol and care, individualized special education and legislation topics that effect those living with rare diseases such as ADNP.
In April of 2016, Sandra was sent to Washington to DC to speak to members of Congress about the difficulties of obtaining genetic testing (LDT's/WES) for rare undiagnosed genetic syndromes in children and the importance to precision medicine.
SANDRA'S ARTICLES, NEWS AND PUBLICATIONS
ONE MOMS MISSION TO FIND CURE FOR SON'S RARE DISEASE: | or | HEALTHWATCH | *CBS News / National
AUTISM AND ADNP SYNDROME: A GENETIC SEARCH FOR A BIOMARKER DISCOVERY | *Autism Speaks
MOTHER CRUSADES CURE FOR SONS RARE CONDITION | *DailyMailUKmed
WHY MY SON WITH ADNP SYNDROME IS JUST LIKE SUPERMAN | * The Mighty.com
WASHINGTON MOM DESPARATE TO FIND CURE FOR SON’S RARE DISEASE | *People.com
LOCAL MOTHER'S QUEST TO DEFEND PRECISION MEDICINE | * The Oregonian – OregonLive
PARENTS, PRECISION MEDICINE, AUTISM AND GENETICS | * Spectrums Magazine
SEAHAWKS PLAYER HONORS WASHINGTON BOY WITH RARE DISORDER - ADNP SYNDROME | *KGW News Portland
A MOTHER'S QUEST TO UNRAVEL A MYSTERY AND PUSH RESEARCH FORWARD - A FIGHT FOR TONY | * Interactive Autism Network at Kennedy Krieger Institute
PRECOCIOUS BABY TEETH SIGNAL RARE FORM OF AUTISM | * Spectrum News
THE COMPASSIONATE SIDE OF NEUROSCIENCE: TONY SERMONE'S UNDIAGNOSED GENETIC JOURNEY - ADNP MUTATION | * Journal of Molecular Neuroscience (co-author)
IAN MEMBER DISCOVERES EARLY WARNING SIGN FOR AUTISM SYNDROME | * Interactive Autism Network at Kennedy Krieger Institute
LOCAL MOM HELPING CHANGE THE WAY DOCTORS LOOK AT RARE GENETIC SYNDROME LINKED TO AUTISM | * FOX-12 NEWS (OREGON)
UNEXPECTED INNOVATIVE EARLY DIAGNOSIS IN AUTISM SPECTRUM DISORDER: PREMATURE PRIMARY TOOTH ERUPTION IN ADNP-MUTATED CHILDREN |
* Translational Psychiatry (co-author)
SAVVY MOM MOVES SCIENCE FORWARD: ADNP AND AUTISM | * Seattle Children's Hosptial – The Autism Blog
ADNP - THE MEDICAL ODYSSEY OF A UNDIAGNOSED CHILD | * Tel Aviv University Newsroom
THE EIGHT AND A HALF YEAR JOURNEY OF UNDIAGNOSED AD | *Frontiers in Endocrinology (co-author)
orangesocks.org interview
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