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



Meet The Team

Staff Team

Alison Taylor

CEO

Alison joined The Myrovlytis Trust as Chief Executive in May 2023, after working in a variety of leadership roles within the medically focussed charity sector for over 20 years. Her previous role as Chief Executive at The Children’s Liver Disease Foundation saw her foster new insights into the needs of rare disease community and the transformative power of research and advocacy.

Katie Honeywood

Operations Manager

Katie joined the Myrovlytis Trust in June 2021. She has over 20 years’ experience within a variety of administrative and management roles across the private and not for profit sector. Katie’s particular passions are human resources, event management and anything that involves organising! Her previous roles include working as an Executive Assistant to the CEO and HR Officer. 

Rachel Miller-Stainsby

Health Information and Engagement Manager

Rachel joined the Myrovlytis Trust as the Health Information and Engagement Manager in October 2023. Rachel has recently completed her MSc in Health Psychology where her focus was on psychosocial management of chronic health conditions. She has also worked in various advocacy roles for the British Psychological Society and in Higher Education where she worked with students living with long term conditions and disabilities. She has also worked in a research group at the University of Strathclyde. Rachel is passionate about patient advocacy, healthcare communication and patient empowerment.

Tash Priya

Communications Officer

Tash joined the Myrovlytis Trust as Communications Officer in May 2023. Tash has experience of working in science communications and raising awareness of rare conditions. She is passionate about making a real difference in the medical field. 

BHD 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. Ortrtud has been a prevalant member of several research papers for BHD with much of her study exploring Receptor relationship to Genetics.

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).

Dr Nishant Gupta

Nishant Gupta is an Associate Professor in the Division of Pulmonary, Critical Care and Sleep Medicine at the University of Cincinnati, where he serves as the director of the interstitial and rare lung diseases program. Dr. Gupta is also the medical director of the international rare lung disease clinic network. Dr. Gupta’s clinical and research focus is in the field of cystic lung diseases such as Birt-Hogg-Dube syndrome, lymphangioleiomyomatosis, pulmonary Langerhans cell histiocytosis, and Sjogren’s. His work is aimed at better defining the natural history, improving detection, and developing novel treatment modalities and monitoring strategies for patients with rare lung diseases.

Dr Charles Steward

Charles Steward has spent around 29 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. Charles has a particular interest in the genetic causes of cerebral palsy and developmental and epileptic encephalopathies. He is currently Head of Patient and Participant Engagement at Genomics England. 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.

Professor 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 Tian Zhang

Tian Zhang, M.D., M.H.S., is an Associate Professor in the Department of Internal Medicine at UT Southwestern Medical Center. She specializes in the diagnosis and treatment of genitourinary malignancies, including kidney, prostate, bladder, and testicular cancers.

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.

Osteosarcoma Science Advisory Board

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.

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 Seth Pollack

Seth Pollack, MD is a medical oncologist and the Director of the Sarcoma Program at the Lurie Cancer Center and the Steven T. Rosen Professor of Cancer Biology at the Feinberg School of Medicine at Northwestern University. Dr Pollack has expertise in both sarcoma treatment and cancer immunotherapy. As a physician-scientist, he runs a translational research lab, developing new immunotherapies designed for patients with advanced sarcoma. He has developed and led multiple experimental immunotherapy trials for sarcoma patients.

Professor 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.

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.

BHD 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.

Osteosarcoma Patient Advisory Board

Sally, USA

I joined the patient advisory board to take my experiences with my son who had osteosarcoma and help others going through this. I am excited to see progress happening with this disease. I am passionate about trying to change the narrative for osteosarcoma, and honored to serve in this capacity.

 

Ruth, UK

My son, Fergus, died of Osteosarcoma in May 2022, 10 days before his 13th birthday. I am not the first to say that the current, four decades old treatment is blunt, cruel and too often ineffective. There is a need for better understanding of the disease itself and then options for safe, targeted treatments. I bring my knowledge of what things are like for those being treated for Osteosarcoma, at all times motivated by the desire to help families avoid the tragedy that we, and so many others, have had to face.

Alejandra is smiling. She has brown hair and is wearing a white top.

Alejandra, Norway

My son Bernardo passed away in July 2021 from Osteosarcoma, just as he was about to turn 17. When he was first diagnosed, we were overwhelmed and didn’t know much about the disease. We were fortunate to have friends and family in the scientific and medical fields who helped us understand what Bernardo was going through and prepare for our meetings with doctors. We were so grateful for their invaluable assistance, as we would have been lost without it. Osteosarcoma Now is an excellent resource that provides accurate and reliable information to anyone, anywhere in the world. I am honored to be a part of the patient advisory board, as I understand the importance of information for families, doctors, and researchers.

 

Charlene is smiling. She is wearing hoop earrings and a black top.

Charlene, UK

I was diagnosed with an Osteosarcoma at the age of 27, where I received limb sparing surgery undergoing a full knee replacement. This was followed by a heavy cocktail of medication, and extremely intensive rehabilitation. On my road to physical recovery, I was unfairly faced with many inequalities and inconsistencies surrounding my care, a lack of mental health support, and additional failings. Now as an award nominated patient advocate, I use my lived experience and passion through my own health inequalities to inform, support and campaign for changes in cancer care. I feel absolutely honoured to be on the patient advisory board to continue the work of raising more awareness and research progress for better treatments and outcomes for osteosarcoma patients.

Governance

You can find out more information about the Myrovlytis Trust governance and finance by visiting the Charity Commission and searching for ‘Myrovlytis Trust‘.

Partnerships

Memberships

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

Connect with us…

Back to top