Meet The Team

Staff Team

Jazzmin Huber

Patient Engagement and Information Manager

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 in February 2021. Jazzmin’s passion is engagement and patient advocacy.

Science Advisory Board

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 Dr Ortrud Steinlein

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

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 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 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 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 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.

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.

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.

BHD Patient Advisory Board

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.   

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.

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

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.

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

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.

Memberships