Driving research, providing support and improving outcomes for rare disease patients and their families

The Team

Staff

Charity Manager: Anna Webb 

After completing a PhD at the MRC Human Genetics Unit (now IGGM) in Edinburgh, Anna undertook postdoctoral research at UCL before moving to scientific publishing (Acquisitions Editor then Senior Editor of a medical genomics journal). She also gained several years of conference and events experience before joining the Myrovlytis Trust.

Email: anna@myrovlytistrust.org

Charity Officer: Jazzmin Huber

Following a degree in Cancer Biology and Immunology at the University of Bristol and a Medical degree at the University of Birmingham, Jazzmin worked as a Doctor for the NHS, before joining the Myrovlytis Trust as a Charity Officer in February 2021.

Email: jazzmin@myrovlytistrust.org

Charity Officer: Katie Nightingale

Katie completed her PhD at the Roslin Institute in Edinburgh before moving to the University of Cambridge to undertake her postdoctoral work. She joined the Myrovlytis Trust as a charity officer in May 2021.

Email: katien@myrovlytistrust.org

Katie Honeywood

Katie has over 20 years’ experience within a variety of administrative roles and has developed extensive experience in office management including Human Resources.  Katie completed her ILM Level 5 in April 2021 and is also a trained project facilitator. She joined the Myrovlytis Trust as office manager in June 2021.

Email: katieh@myrovlytistrust.org

Advisory Board

Professor Eamonn Maher

MD FRCP FMedSci, Professor of Medical Genetics and Genomic Medicine at  the University of Cambridge, UK. Professor Maher’s work focuses on human genetic disorders. Current research interests include inherited and non-inherited kidney cancers, such as VHL and BHD syndrome.

Dr Laura Schmidt

PhD, Principal Scientist at the National Cancer Institute, NIH, USA. Dr Schmidt’s research focuses on identifiying new genes involved in familial renal cancer. Dr Schmidt was part of the teams that cloned the VHL tumor suppressor gene, and that identified mutations in Folliculin, the gene mutated in BHD syndrome.

Professor Andrew Tee​

PhD, Research Lecturer at the Institute of Medical Genetics of Cardiff University School of Medicine, UK and AICR fellow. Dr Tee leads a research group investigating the cellular mechanisms underlying tuberous sclerosis complex and BHD syndrome, particularly the activity of a key protein called mammalian target of rapamycin (mTOR).

Professor Arnim Pause 

PhD, Associate Professor in the Department of Biochemistry and Canada Research Chair in Molecular Oncology at McGill University, Canada. Professor Pause’s research interests include the functional characterization of the Folliculin protein in C.elegans and mouse models.

Dr Dimitrios Iliopoulos

Dr. Dimitrios Iliopoulos is co-founder & Chairman of Attica Sciences Ltd, a biotech company developing innovative therapies for different  cancer types, including osteosarcomas. He was a faculty at Harvard & UCLA Medical Schools and and Founder & Director of the UCLA Center for Systems Biomedicine funded by the Eli & Edythe Broad Foundation. He has received several national and international awards for the identification of novel genes and development of drugs for patients with cancer and autoimmune diseases.

Professor Daniel Gale

Daniel Gale is St Peter’s Chair of Nephrology at University College London. He leads a research group studying the genetic and biological mechanisms underlying renal diseases. He discovered, and identified the causes of, the diseases HIF2α erythrocytosis with pulmonary hypertension, which results from a defect of oxygen sensing, and CFHR5 nephropathy, which results from a defect of complement regulation and is endemic in Cyprus. Using large-scale genomics his group has also advanced understanding of the genetic architecture of disorders including IgA nephropathy, C3 glomerulopathy, and steroid sensitive nephrotic syndrome.

Professor Ann Nordgren

Ann Nordgren is Adjunct Professor of Clinical Genetics at Karolinska Institutet and Senior Consultant at the Department of Clinical genetics, Karolinska University Hospital. Her clinical work is mainly focused on genetic counceling, syndrome diagnostics and childhood cancer predisposition. Ann is group leader of the Rare Diseases Research group at KI and is responsible for a large national Childhood Cancer Predisposition (ChiCaP) initiative within Genomic Medicine Sweden. She is also leader of Karolinska Undiagnosed Diseases Program  (K-UDP) a large clinical and research multidisciplinary expert team for syndrome diagnostics and member of the Undiagnosed Diseases Network International (UDNI).

Professor Manuel Ramirez

Manuel Ramirez is Head of the Advanced Therapy Unit at Hospital Universitario Niño Jesús, Madrid. He is responsible for the Oncohematology Diagnostics Unit, and of the Oncohematology Research laboratory. His research has a clear translational focus on advanced therapies for paediatric diseases, mostly hematology and oncology. His work is enabled by the fully validated GMP facility for manufacturing cell- and gene-therapy medicines, and engineered tissue medicines, the only of its type in a paediatric hospital in Spain. Manuel’s work encompasses all steps of the translational cycle, from preclinical (experimental lab and animal models) to clinical (clinical trials and compassionate use programs). 

Professor Alejandro Sweet-Cordero

Alejandro Sweet-Cordero is a cancer biologist and practicing pediatric oncologist focused on basic and translational cancer research.  His laboratory’s disease focus includes pediatric sarcomas and lung cancer. Their sarcoma work is focused on defining mechanisms driving osteosarcoma and Ewing sarcoma progression, metastasis and therapy resistance. He has extensive expertise in integrative genomic analysis (WGS, RNAseq, ATACseq) and functional genomic studies using CRISPR/CAS9.  He uses these tools to drive gene and network discovery using primary tumors, patient-derived xenograft models, and genetically engineered mouse models.  Alejandro also has experience in real-world application of tumor sequencing for precision cancer medicine and currently leads the Molecular Oncology Initiative (MOI) at UCSF.

Professor William Newman

William Newman is a consultant Clinical Geneticist in Manchester and the Clinical Director of the NW Genomic Medicine Service Alliance (GMSA). He also Chairs the NHSE Clinical Genomics Clinical Reference Group for Clinical Genomics. William has a long-standing interest in the discovery of genes resulting in rare inherited conditions, especially related to Perrault syndrome (hearing loss and ovarian failure) and bladder disorders. This work has resulted in a greater understanding of the causes of these conditions and is now progressing to develop therapeutic approaches.

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