Driving research, providing support and improving outcomes for patients and their families affected by rare conditions



Meet The Team

Staff Team

CEO: Anna Webb

After completing a PhD at the MRC Human Genetics Unit 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.

Senior 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.

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.

Office Manager: Katie Honeywood

Katie has over 20 years’ experience within a variety of administrative roles and has developed extensive experience in office management.  She joined the Myrovlytis Trust as Office Manager in June 2021.

Science 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 Dr Ortrud Steinlein

Ortrud Steinlein is a Human Geneticist and Head of Department at the Institute of Human Genetics, LMU Munich.

Dr Dimitrios Iliopoulos

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 and CFHR5 nephropathy. 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.  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.

Dr Logan G. Spector

Logan G. Spector is Assistant Professor of Pediatrics in the Division of Epidemiology/ Clinical Research at the University of Minnesota. His research focuses on the causes of childhood cancer with a focus on childhood leukemia, bone sarcomas, and hepatoblastoma. His work includes both traditional and genetic epidemiologic approaches. He is currently Chair of CLIC, which pools epidemiologic studies of pediatric cancers from across the world to better ascertain their causes.

Dr Tian Zhang 

Tian Zhang  is Associate Professor within the Division of Medical Oncology and Department of Medicine at Duke, specializing in genitourinary (GU) malignancies. She actively leads both clinical and translational research studies in the GU Oncology, Phase 1, and Center for Cancer Immunotherapy groups. She is the overall study chair for the phase 3 PDIGREE trial for metastatic renal cell carcinoma in the National Clinical Trials Network and also serves as PI for several investigator-initiated trials. Her research focus is in improving novel therapies and biomarkers for patients with prostate, kidney, and urothelial cancers.

 

Professor Robin Jones

Robin Jones is a medical oncologist specialising in the treatment of bone and soft tissue sarcomas and Head of the Sarcoma Unit at The Royal Marsden. He has experience in conducting Phase I, II and III trials, as well translational studies in sarcomas. Professor Jones trained in medical oncology at The Royal Marsden and between 2010 and 2014 he was Head of the Sarcoma Program at the University of Washington/Fred Hutchinson Cancer Research Center in Seattle. His main research interest focuses on clinical trials and translational research in sarcomas.

Mehdi Mollapour

Mehdi Mollapour is a Professor, Vice Chair for Translational Research and Director of Renal Cancer Biology Program for the Department of Urology, and Adjunct Professor at the Department of Biochemistry and Molecular Biology at SUNY Upstate Medical University. Mollapour is widely recognized for his research on post-translation regulation of the molecular chaperone Heat shock protein-90 (Hsp90) and co-chaperones in cancer. Mollapour’s finding on post-translational modifications of the Hsp90 chaperone machinery has also explained the reasons for tumors sensitivity and selectivity towards the Hsp90 inhibitors.

Dr Charles Steward

Charles Steward has spent around 28 years working with the human genome on the Wellcome Genome Campus, Cambridge UK. He spent 22 years at the Wellcome Sanger Insititute, which is where he did his PhD. He is currently the Patient Advocacy and Engagement Lead at Congenica, and has a particular interest in the genetic causes of developmental and epileptic encephalopathies. Charles is the father of two children with severe neurological disorders who have been through numerous UK-based genomic studies. He is passionate about how patient advocacy and engagement can drive positive change for people, families and caregivers affected by rare genetic disorders.

Awen Gallimore

Awen Gallimore is a Professor at the Division of Infection and Immunity, Cardiff University. She gained a DPhil in Professor Andrew McMichael’s laboratory in Oxford, studying the immune response to simian and human immunodeficiency viruses. With a Wellcome Trust travelling fellowship she subsequently moved to the laboratory of the Nobel laureate Professor Rolf Zinkernagel to laboratory to further study factors important for anti-viral immunity.  She then established her own laboratory in the Nuffield Department of Medicine in Oxford to look at ways of persuading the immune system to recognise cancer. Awen moved to Cardiff in 2002 where her lab takes basic research using animal models of cancer through to testing novel immunotherapies in patients with cancer.

Patient Advisory Board

Dieke, Netherlands

In March 2021 I was diagnosed with BHD as the first one in my family. I work as a senior HR software consultant and have no medical background, but I am very interested to know as much as possible about my condition. Being a member of the Patient Advisory Board, gives me the possibility to get first-hand information about BHD. On top of that I value the unique opportunity to give my opinion on issues concerning BHD, that can be of huge importance to me, my family and other BHD patients.

Ian, UK 

I am 53, newly diagnosed with BHD and work as a critical care nurse. I was delighted to join the advisory board of the BHD Foundation, who were instrumental in helping me get my diagnosis. I feel it is vital those affected have direct input into the future management of BHD. I hope to represent the thoughts and concern of others as well, not just myself in this role, I did just that with the new registry recently. I look forward to doing the same with website development, research and other projects including more awareness-raising that seems so necessary.   

Jenny, France 

I am gradually becoming a specialist in this field due to the fact that four members of my family now have BHD syndrome. I want to devote as much of my time as possible to raising awareness amongst members of the medical world to the necessity of an early diagnosis of BHD in order to forewarn against kidney cancer.  Staying aware of all recent developments in research work can allow me to inform and help other patients. I hope to modestly contribute to finding ways to heal, ultimately, this genetic disease.

 

Scott, USA

I was diagnosed with BHD in late 2001, after a partial  nephrectomy at age 37 showed two high grade, Chromophobe Renal Cell Carcinomas.  In 2002, I travelled to the US National Institute of Health (NIH) with my younger brother and was confirmed to have BHD.  I have an international health care consulting business and have been active in educating physicians on BHD. Given I have four (now adult) children I am looking to advance research and find a potential cure.

Elizabeth, USA 

As a person who has experienced the effects of BHD Syndrome without knowing why until many years later, and as a mother who now knows one child also has inherited the gene mutation, I want to do what I can to raise awareness and increase information.  

 

Barnaby, USA 

I have experienced first hand the problems of underdiagnosis and unfamiliarity with BHD, ranging from some of the most recognized hospitals in the world to developing countries.   Underdiagnosis contributes to great anxiety for patients and can lead to poor medical and lifestyle advice, and suboptimal treatment decisions.  I hope to support the Myrovlytis Trust’s inspirational work in bringing attention to this little-known condition.

Governance

Becoming a Trustee

The Myrovlytis Trust (www.myrovlytistrust.org) is a charity (UK Charity Commission number 1122073) founded in 2007 to promote research into rare diseases and advance education of the public in medical and molecular genetics.

By providing information and support to patients, raising awareness among clinicians and the public and strategically funding research, the Myrovlytis Trust aims to transform the outlook for rare diseases. With an initial focus on two conditions (Birt-Hogg-Dubé Syndrome and osteosarcoma), we fund research directed towards new treatments. We want to ensure that patients gain access to the same state-of-the-art technologies, breakthroughs and therapies as those with more common diseases, and work collaboratively with a variety of organisations to achieve this.

The Trust incorporates both the BHD Foundation (www.bhdsyndrome.org) and Osteosarcoma Now (www.osteosarcomanow.org).

We have funded more than £6 million in research grants to laboratories around the world.

We are in a period of reinvigorating the charity, with a new business plan in place along with a new staff team who are committed to the direction the charity is taking.

We are seeking to appoint new Trustees who have the experience to promote the charity’s vision, mission, and goals, and assist with strategy development to ensure the charity meets its financial, legal and governance obligations.

Candidates should be aligned to the ethos of the charity and be keen to contribute their expertise to provide governance and support.  We would love to hear from people with a variety of backgrounds to help us develop a diverse board. A scientific or medical background is not essential.  We are particularly interested to hear from individuals with skills in finance, HR, law (in particular intellectual property), fundraising, scientific research, as well as those with lived experience of a rare disease.

This is an exciting time to be joining a small but agile charity with big plans to expand their remit in the world of rare diseases.

To apply please send a copy of your CV and covering letter to contact@myrovlytistrust.org

For an informal discussion on the roles please email Anna Webb, CEO, at anna@myrovlytistrust.org.

We will be interviewing candidates as applications arrive, so please be sure to contact us at the earliest opportunity.

Trustee Handbook

We have created a Trustee Handbook to assist both current and prospective Trustees.

This handbook sets out the purpose, responsibilities and roles expected of all Myrovlytis Trust Trustees. It has been designed to provide you with an understanding of how we operate as an organisation and what is expected from you in your role as a trustee.

We value our trustees and are grateful for the continued support and commitment they bring to the Myrovlytis Trust.

Partnerships

Memberships

Osteosarcoma Institute
Bardo Foundation
Rare Revolution Magazine
Gene People logo
Gene People logo
Sarcoma Patient advocacy Global Network

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