who we are

Trustees:

Professor Colin Baigent FRCP FFPH

colin-baigent

Colin Baigent studied Medicine at Bristol and Oxford University (1983-89), having originally studied Mathematics at Oxford (1980-83). He became an MRC career scientist in 2002, and in 2006 was appointed Professor of Epidemiology at Oxford. From July 2013, he became Deputy Director of Clinical Trial Service Unit (CTSU).

His main interest is in cardiovascular epidemiology, and most particularly the design, conduct and application of large-scale randomised trials in cardiovascular disease. His research includes the coordination of meta-analyses of randomised trials, typically with individual participant data, resulting in landmark papers that have helped determine the effects of aspirin (and other antiplatelet drugs), non-steroidal anti-inflammatory drugs, fibrinolytic therapy, and statins in different types of patients. His group has also contributed to a better understanding of cardiovascular disease in patients with renal impairment through the Study of Heart and Renal Protection (SHARP), the largest ever in patients with moderate-to-severe chronic kidney disease (CKD), recruiting 9438 patients in nearly 400 hospitals in 18 countries.

Alport UK is very lucky to be able to tap into his extensive expertise in international clinical trials to enable vital research into new therapies for Alport Syndrome.

Susie Gear

susie-gear-alport

Susie’s passion is using her experience in international business to facilitate the innovative patient/clinical/academic science/industry international collaboration that is creating a brighter future for those living with Alport Syndrome. Susie’s 26 years in international business started in the design and communications industry following her BA Hons in Typography & Graphic Communication at Reading University. With a move into management consultancy and 12 years at Accenture plc, she then spent 2 years in the Cabinet Office as Director of Change for the Civil Service. Susie now has a portfolio of roles that include consulting projects for multinational businesses and government; contributing to executive education programmes and workshops at Oxford Universities’ Said Business School; advisory work for the Institute for Government; an NHS board role as patient advocate on NHS England’s Rare Diseases Advisory Group and most importantly the very enjoyable role of ‘Organiser’ for Alport UK’s vital Information Days but also for the series of International Workshops on Alport Syndrome. Susie’s mother was diagnosed with Alport Syndrome over 40 years ago and it impacts many members of the family.

Jules Skelding

photo Jules for web

Jules has a BA Hons in Psychology from London Guildhall University.  She then applied this in the business world and worked at Brora, a Scottish Cashmere retail and mail order company.  She left there after 15 years as a senior manager, running the mail order and warehouse.  She has personal reasons for being involved in Alport UK with various members of her close family impacted.  Her interest lies on the patient side, connecting with the families, organising patient meetings and making sure everyone has the information and support that we can offer.

 

Scientific Advisory Board:

Professor Frances Flinter

FrancesFlinterFrances is a clinical geneticist working at Guy’s Hospital. Initially she trained in Paediatrics, but meeting same families affected by Alport’s syndrome in 1983 led to a period of genetics research studying the way that Alport’s affects people, and also mapping the gene for X-linked Alport’s syndrome. Frances decided to become a geneticist was appointed a consultant in 1994. Her early interest in Alport’s syndrome has continued, and she has enjoyed fruitful collaborations with experts from all over the world. The DNA laboratory at Guy’s (supported by a grant from Kidney Research UK, with money raised by a patient) now provides a national and international service screening for mutations in Alport’s genes. Frances has met around 500 families who are affected and really appreciates the support that patients receive from contact with Alport UK.

Rachel Lennon

rachel lennon1Rachel graduated from Nottingam University Medical School in 1994. She trained in clinical paediatrics in Nottingham, London and the South Western Deanery and she completed subspecialty training in Paediatric Nephrology in Bristol. She was awarded a Wellcome Trust Research Training Fellowship in 2004 and completed her PhD studying circulating mediators of podocyte injury in proteinuric states in 2007. She was appointed to an Academic Clinical Lecturership in 2007. In 2010 Rachel was awarded a Stepping Stones Fellowship from the University of Manchester and a Wellcome Trust Intermediate Clinical Fellowship to establish her research group and to continue her research focussed on understanding mechanisms of glomerular disease. Specifically she aims to understand how the glomerular filtration barrier is formed, maintained during life and altered in disease with a particular focus on cell adhesion and extracellular matrix in the glomerulus.

Volunteers:

Alice Turner

IMG_20141227_110039282[1]Alice has a BA Hons in hotel and catering and then ended up in estate agency for 10 years. Her final role was for Knight Frank which she left to run her own personal assistant business before starting a family. Alice has also spent a lot of time ‘camping rough under canvas’ doing her Bronze, Silver, Gold and Expedition Leader awards for Duke of Edinburgh. Now her girls are older, she is keen to give something back and volunteers for a number of different charities. Alport UK is particularly close to her heart as she has family links with one of the co-founders that go back a long way. She describes herself as one of the back room team who does research, updating procedures, keeping people informed on Facebook, lots of fundraising initiatives and above all supports the two co-founders and families far and wide

 

Wilma Calderwood

wilma1Wilma has an N.C. and an HNC in Childcare and Education and has 16 years of experience in working with children. She is currently the Senior Practitioner in the 0-2 year old room of a Private Nursery.

Wilma has a long term connection with Alports, since herself, two brothers, son and daughter all have this Alport Syndrome. When looking for information and support Wilma searched online and found links which led her to finding and making contact with Alport UK. This culminated in Wilma and her family going along to the Edinburgh Information day and finally meeting Susie and Jules. This proved to be a most valuable experience since they had never met or talked with other people (apart from their own family) in a similar position as themselves. It quickly became evident that a support network would be very beneficial. From here, ‘Alports Warriors’ facebook page was born and now Wilma is one of the administrators.

Wilma’s passion for Alport UK is reflected in the many events she organises to raise funds for the charity. She tirelessly researches different methods of fundraising and establishes links with companies and businesses to promote the charity and hopefully potential sponsorship.

Steve Fry

Steve Fry PicSteve has been working closely with communities across England in different local authorities to help those that need housing and assistance with rent. He is an Alport Syndrome patient, receiving a live-donor kidney transplant from a close friend in 2012 at the age of 33.

Since the transplant, Steve has been involved in Transplant Sports games with the Addenbrooke’s Hospital team, enjoying Archery, Badminton and Volleyball in particular.

It was after speaking with the co-founders of Alport UK that Steve realised how important it is to be able to communicate with others that share the same rare disease and, having never met another person with the condition, was overwhelmed at the positive experience of the first family meeting in London. It is for this reason that the social and family side of the charity are his main focus and, behind the scenes, offers advice and a friendly ear to those who want to talk about their experiences or voice their concerns.

 

Comments are closed.