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Schinzel-Giedion Syndrome Foundation

Schinzel-Giedion Syndrome Foundation

Providing support for families caring for a child with Schinzel-Giedion Syndrome.

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Trustees

Dana Bradley

Dana Bradley


My husband Richard and I are parents to our son, Alex.  We live in New York City.  Until recently I worked in Human Resources at JPMorgan Chase, a leading financial services firm.  After a 25-year career in the fast-paced New York finance industry, I decided I wanted to use my skills as a leader, communicator, and problem solver for a different cause.
 
I have a BA in Psychology and an MBA in Industrial Organizational Psychology.  During my career at JPM, I worked in several lines of business and served as a global talent and organizational development manager, employee experience manager and HR Business Partner.
 
My interest in rare disease was piqued by my personal experience at an early age with members of my own family.  The difficulties we had in obtaining an accurate diagnosis for my mother’s Lupus meant that I spent many hours reviewing biomedical research publications.  And my childhood summers included living with my aunt who has Down Syndrome.  During those vacations I saw first-hand the impact such a condition can have on daily life.  So, from an early age I developed a deep empathy for those suffering with a chronic condition.
 
I have a desire to learn about Schinzel-Giedion Syndrome and to advocate for SGS children and their families.  I have a toolkit of skills from my career in HR that I believe will equip me well for my role as Trustee of the SGS Foundation. I am really looking forward to getting to know the SGS children and their families better.

Contact Dana

Board of Trustees

Our Board of Trustees
Our Board of Trustees

Our Trustees are all parents of children with Schinzel-Giedion Syndrome. We are all volunteers, passionately driven to raise awareness and improve the lives of children born with this rare genetic disorder.

Title
Nuala Summerfield

Founder and Chair of Trustees

My Story
Leina Zhang
Emma Hudson

Secretary

My Story
Carina Rudolfsson
Carina Rudolfsson

Social Media

My Story
 Charla Andersen  
Charla Andersen  

Fundraising

My Story
Dana Bradley
Dana Bradley
My Story

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Dr. Jessica Duis, M.D.

Dr. Jessica Duis, M.D.

Dr Jessica Duis is a pediatric geneticist and special care pediatrician at Children’s Hospital Colorado. She did her training at Johns Hopkins in Baltimore, MD, where she focused her work on epigenetic disorders. She has built multidisciplinary Centers of Excellence across the United States with a focus on patient care, establishing standards of care, translational research, clinical trial design, and outcome measures. She is an expert of Angelman, Duplication 15q, and Prader-Willi syndromes and has published guidelines on their management. Her research has included investigator-driven clinical trials and translational outcome measure design both in the lab and in the natural environment.

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Scientific and Medical Advisory Board

Scientific and Medical Advisory Board
Our Scientific and Medical Advisory Board

We are very fortunate to have such a knowledgeable and well-respected team of scientists and medical doctors on our Advisory Board. Each of them shares our commitment to advancing the understanding of Schinzel-Giedion Syndrome and improving the lives of children born with this rare genetic disorder.

Title
Matthew Burkhardt

Chair of Scientific and Medical Advisory Board | Preclinical Target Discovery

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Leina Zhang
Dr Rocío Acuña Hidalgo

Molecular Genetics

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Title
Dr Bregje van Bon

Clinical Genetics

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Dr Hans Bjornsson
Dr Hans Bjornsson

Human Genetics and Epigenetics

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Dr Jessica Duis
Dr Jessica Duis

Pediatric Geneticist and Special Care Pediatrician

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Dr. Hans Bjornsson, M.D., Ph.D.

Dr. Hans Bjornsson, M.D., Ph.D.

Dr. Bjornsson did his graduate work under the supervision of Andrew P. Feinberg, a leader in the field of epigenetics. He then joined the combined program in pediatrics and human genetics at Johns Hopkins. During his residency training, Dr. Bjornsson worked with Dr. Hal Dietz, a leader in the field of developing therapeutic options for patients with Mendelian disorders. In 2012, Dr. Bjornsson became an Assistant Professor of Pediatrics and Genetics at the McKusick-Nathans Institute of Genetic Medicine at Johns Hopkins. He has received multiple awards while at Johns Hopkins for research and clinical care. Dr. Bjornsson founded the Epigenetic and Chromatin Clinic in 2012, which is dedicated to the care of patients with epigenetic disorders and disorders of epigenetic machinery. He currently is Associate Professor of Genetics at Johns Hopkins University and Professor of Translational Medicine and Pediatrics at the University of Iceland.

Back to Advisory Board

Scientific and Medical Advisory Board

Scientific and Medical Advisory Board
Our Scientific and Medical Advisory Board

We are very fortunate to have such a knowledgeable and well-respected team of scientists and medical doctors on our Advisory Board. Each of them shares our commitment to advancing the understanding of Schinzel-Giedion Syndrome and improving the lives of children born with this rare genetic disorder.

Title
Matthew Burkhardt

Chair of Scientific and Medical Advisory Board | Preclinical Target Discovery

Read More
Leina Zhang
Dr Rocío Acuña Hidalgo

Molecular Genetics

Read More
Title
Dr Bregje van Bon

Clinical Genetics

Read More
Dr Hans Bjornsson
Dr Hans Bjornsson

Human Genetics and Epigenetics

Read More
Dr Jessica Duis
Dr Jessica Duis

Pediatric Geneticist and Special Care Pediatrician

Read More

Newsletter Signup

Sign-up to receive family stories and updates on our research projects and fundraising campaigns.

Dr. Rocío Acuña Hidalgo, Ph.D.

Dr. Rocío Acuña Hidalgo, M.D., Ph.D.

Rocío Acuña Hidalgo, Ph.D. is a medical doctor and human geneticist based in Berlin, Germany. Her expertise lies in bringing together Next Generation Sequencing (such as exome sequencing) and molecular biology to unravel the molecular mechanisms of mutations that lead to human disease. Rocío completed her Ph.D. at Radboud University Medical Center, where she studied the molecular effects of SETBP1 mutations in Schinzel-Giedion syndrome using a combination of in silico and in vitro models. She did postdoctoral research at the Max Planck Institute for Molecular Genetics in Berlin, working on novel technologies to improve the diagnosis of patients with genetic disorders. She then co-founded Nostos Genomics, a company combining software and molecular biology approaches to improve the diagnosis of patients with genetic diseases. She currently serves as the Chief Technological Officer at Nostos Genomics. 

Back to Advisory Board

Scientific and Medical Advisory Board

Scientific and Medical Advisory Board
Our Scientific and Medical Advisory Board

We are very fortunate to have such a knowledgeable and well-respected team of scientists and medical doctors on our Advisory Board. Each of them shares our commitment to advancing the understanding of Schinzel-Giedion Syndrome and improving the lives of children born with this rare genetic disorder.

Title
Matthew Burkhardt

Chair of Scientific and Medical Advisory Board | Preclinical Target Discovery

Read More
Leina Zhang
Dr Rocío Acuña Hidalgo

Molecular Genetics

Read More
Title
Dr Bregje van Bon

Clinical Genetics

Read More
Dr Hans Bjornsson
Dr Hans Bjornsson

Human Genetics and Epigenetics

Read More
Dr Jessica Duis
Dr Jessica Duis

Pediatric Geneticist and Special Care Pediatrician

Read More

Newsletter Signup

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Matthew Burkhardt

Contact Matthew

Matthew Burkhardt

Chair of Advisory Board

Matthew has over 15 years of experience in preclinical target discovery across academic, startup, and industry sectors. He began in traumatic brain injury with the Neurosurgery Department at the University of Pennsylvania, moved into the industry at Merck for in vivo Alzheimer’s Disease small molecule drug discovery and disease modeling, and then moved to iPierian, one of the first companies to use the induced pluripotent stem cell (iPSC) platform. Since then Matthew has held positions at the Allen Brain Institute, Cellogy, and Novartis.

With Merck, he ran the bench experiments to support the in-licensing of Alectos Therapeutics’ O-GlcNAcase inhibitor (MK-8719). At iPierian, Matthew supported the early-stage discovery programs for iPierian/True North Therapeutics’ Progressive Supranuclear Palsy (PSP) and Cold Agglutinin Disease (CAD) monoclonal antibody assets that were sold to Bristol-Myers Squibb (2014) and Bioverativ (2017), respectively. Additional discovery work at iPierian/TrueNorth involved high throughput phenotypic screening for ALS candidate compounds.

Recently, Matthew has been heavily involved in entrepreneurial and innovative small company development in the San Francisco Bay Area (Indee Labs, Girihlet, IndieBio, Y Combinator, Verge Genomics). Further work has been done with rare disease organizations to advance their interests in addressing unmet needs.

Back to Advisory Board

Scientific and Medical Advisory Board

Scientific and Medical Advisory Board
Our Scientific and Medical Advisory Board

We are very fortunate to have such a knowledgeable and well-respected team of scientists and medical doctors on our Advisory Board. Each of them shares our commitment to advancing the understanding of Schinzel-Giedion Syndrome and improving the lives of children born with this rare genetic disorder.

Title
Matthew Burkhardt

Chair of Scientific and Medical Advisory Board | Preclinical Target Discovery

Read More
Leina Zhang
Dr Rocío Acuña Hidalgo

Molecular Genetics

Read More
Title
Dr Bregje van Bon

Clinical Genetics

Read More
Dr Hans Bjornsson
Dr Hans Bjornsson

Human Genetics and Epigenetics

Read More
Dr Jessica Duis
Dr Jessica Duis

Pediatric Geneticist and Special Care Pediatrician

Read More

Newsletter Signup

Sign-up to receive family stories and updates on our research projects and fundraising campaigns.

Dr. Bregje van Bon

Dr. Bregje van Bon, M.D., Ph.D.

Dr. Bregje van Bon, M.D., Ph.D. is a clinical geneticist at Radboud Medical Center, Nijmegen, the Netherlands.

She combines clinical work in the hospital with teaching medical students and conducting research. 

In one of her research projects, the SETBP1 gene was discovered as the genetic cause of Schinzel-Giedion Syndrome (SGS).  

She collected the clinical and molecular details from numerous children with this disease and published these findings. 

At home, she lives with her husband and three school-aged boys. 

Back to Advisory Board

Scientific and Medical Advisory Board

Scientific and Medical Advisory Board
Our Scientific and Medical Advisory Board

We are very fortunate to have such a knowledgeable and well-respected team of scientists and medical doctors on our Advisory Board. Each of them shares our commitment to advancing the understanding of Schinzel-Giedion Syndrome and improving the lives of children born with this rare genetic disorder.

Title
Matthew Burkhardt

Chair of Scientific and Medical Advisory Board | Preclinical Target Discovery

Read More
Leina Zhang
Dr Rocío Acuña Hidalgo

Molecular Genetics

Read More
Title
Dr Bregje van Bon

Clinical Genetics

Read More
Dr Hans Bjornsson
Dr Hans Bjornsson

Human Genetics and Epigenetics

Read More
Dr Jessica Duis
Dr Jessica Duis

Pediatric Geneticist and Special Care Pediatrician

Read More

Newsletter Signup

Sign-up to receive family stories and updates on our research projects and fundraising campaigns.

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