Maggie Wellington Maggie Wellington Expand Maggie has 5 children - Efren who is 9 and has Duchenne and his siblings Caspar 11, Mireille 13, Nissa 15 and Aleka 22. They live in Trafford in Greater Manchester. Efren (often known as Renzo) was diagnosed with DMD in December 2014. At the time Maggie was managing a pre-school and completing a degree in childhood youth studies. She now works part time as a childcare practitioner at a childcare centre ,as well as home educating her four youngest children. In January 2015 Maggie and Aleka set up Raise for Renzo as a way to share Efren's experience of living with Duchenne with family and friends, as well as the wider community through social media. They also fundraise for Duchenne charities and share information to raise awareness about the condition. Maggie is interested in trials and treatments being available as widely and quickly as possible, and although Efren is ambulant, she would like to see more trials open to non ambulant boys and men.
Pauline Clark Pauline Clark Expand Pauline worked for several years as a laboratory technician before starting a family. Pauline’s youngest son Josh was diagnosed with Duchenne when he was 5. Josh, now 18, has an older brother Ryan, and older twin sisters Ellie and Lauren. Since Josh’s diagnosis, Pauline has thrown herself into numerous fundraising activities, and worked in Advocacy and Fundraising. Pauline is currently studying a BA in English and Creative Writing, and is part owner and Director of an access information website, due to launch next year. Pauline has a particular interest in trials for non-ambulant participants, and for adults living with Duchenne.
Katrina Ruthven Katrina Ruthven Expand Katrina has a son, Alexis, with Duchenne and three daughters, Eva, Beatrice and Elizabeth. Alexis was diagnosed with Duchenne at six months old. Following this Katrina left her career in administration to become a full-time mum and home educator. In 2015 Katrina started Duchenne Parents Zone, an internet support group for parents of children with Duchenne in the UK and Ireland. Katrina also created and manages Duchenne Awareness UK, a Facebook page aimed at raising awareness of Duchenne. Katrina is passionate about providing support for families affected by Duchenne and has an interest in Duchenne genetics.
Vici Richardson Vici Richardson Expand Vici has been involved in the Duchenne community for 12 years. She has a son Zak, with Duchenne, and two girls, Eva and Sian. Zak was diagnosed at 18 months old, and since then, Vici has campaigned and raised money for Duchenne research. She left her job in 2005 as a Children's Services Manager for a childcare company and began work as PPUK's (now Action Duchenne) first fundraiser. She worked with them to lobby parliaments in England, Scotland, Wales and Northern Ireland. For the last 6 years, Vici has worked as a Direct Payment Support Officer with a disability charity and city council, supporting people to use their social care budget, as well as giving information and advice on independent living. Vici is also a founder and trustee of Duchenne Now. Vici is committed to seeing treatments for all, in the shortest time frame possible. She is particularly keen to see non-ambulant trials set up.
Divyesh Popat Divyesh Popat Expand Divyesh joined IWG LLP, a firm of commercial lawyers based in Holborn in London in 1996 when he qualified as a solicitor, and has been a partner since the year 2000. He specialises in commercial litigation and dispute resolution. He is also father to Raul, an inspirational 13 year old boy with Duchenne muscular dystrophy. In 2007, soon after Raul was diagnosed, he became a trustee for Action Duchenne, in order to support, in every way possible, those carrying out essential work to find treatments for Duchenne, and those working to improve the lives of the children living with the condition. While he has not been a trustee of Action Duchenne for a number of years, he (and IWG) have continued to support and work with Duchenne charities and the Duchenne community.
Justine & Alex Latham Justine & Alex Latham Expand Justine and Alex’s third child, Jamie, was diagnosed with Duchenne muscular dystrophy, just after his first birthday. At this time, Justine gave up her career as a stockbroker, to become a full-time mum. Alex has been in finance for nearly 20 years, and in 2015, with the help of friends and family, Alex and Justine organised a triathlon, Tri4Duchenne, which raised over £350,000 for Duchenne UK.
Lisa Kuhwald Lisa Kuhwald Expand Lisa Kuhwald is Duchenne UK’s Advocacy Support Officer - this is a voluntary role. Lisa is mum to 4 boys, Oscar, Casper, Felix and Herbie (Felix and his twin Herbie pictured). They live in Altrincham near Manchester. She studied Chemistry at the University of Hull and worked as a teacher and in the pharmaceutical industry. Lisa now runs the family property business in Manchester, founded by her husband Karl. They set up Team Felix in 2013, after their son Felix, then 2, was diagnosed with Duchenne. The goal is to raise as much money as possible, and as quickly as possible, to fund research into treatments to end Duchenne.
Fleur Chandler Fleur Chandler Expand Fleur is a health economist and has worked in the pharma industry for over 20 years, across Clinical Research and Health Outcomes. Her current role is at GSK is Therapeutic Area Head in Global Value Evidence and Outcomes. Her son, Dom, has DMD.
Nick Catlin Nick Catlin Expand Nick is the parent of a son, Saul, who is living with Duchenne muscular dystrophy. He was the founder member and former CEO for the charity, Action Duchenne. Nick has an honours degree in Chemistry and a PGCE. He established the first patient clinical trial database, the DMD Registry, and is currently a member of its advisory board. He is also a member of the Treat NMD TACT committee for evaluating new treatments and medicines for Duchenne. From 2005 until 2012, he was a member of the MDEX Consortium SAB, which supported the first clinical trial for exon skipping using morpholinos with boys living with DMD in the UK. When CEO at Action Duchenne, Nick established and contributed to the first of many Duchenne International Research Conferences in the UK and he also set up the APPG for Muscular Dystrophy in the Houses of Parliament. He has recently campaigned with families to win approval for the PTC genetic therapy Translarna with NICE and NHS England.
Rebecca Burnett Rebecca Burnett Expand Becky Burnett is mother to Tom, who has Duchenne muscular dystrophy, and Amy. She graduated from Oxford University and worked in London and Hampshire as a lawyer, specialising in medical negligence. Shortly after Tom was born in 2007, she and her husband Gary, spent 3 years self-building their dream home - Tom was diagnosed with Duchenne muscular dystrophy a few weeks after they had moved in. Tom has taken part in 3 clinical trials at Great Ormond Street Hospital, two for an experimental drug for Duchenne and one for a distraction device used when giving blood. Her experience during this time has left her in no doubt that the patient voice is not being listened to by the drug companies and she believes passionately that it should be the primary consideration at every step of drug research.
Alasdair Robertson Alasdair Robertson Expand Alasdair is chair of the Patient Advisory Board and also the first parent member of our Scientific Advisory Board. His son Felix, aged 4, was diagnosed with Duchenne in December 2014. Since then, he has wholeheartedly thrown himself in to the race to find a cure, as well as the search for innovative, disease-mitigating treatments. Alasdair studied at Loughborough University and the University of Cambridge. He has a London-based surveying company and lives in Gloucestershire, with his wife Robyn, their two children, Felix and his little sister Lumi, aged 2, and ‘Happy’ the dog.
Janet Hoskin Expand Janet is Senior Lecturer in Special Education at the University of East London, teaching on both undergraduate and postgraduate programmes. In 2001, she co-founded the charity, Action Duchenne, with her partner, Nick Catlin, after their son, Saul, was diagnosed with DMD. From 2008 to 2011, Janet ran the lottery-funded ‘Include Duchenne’ project, which worked with over 60 children with DMD and their schools and families across the UK, to improve reading and learning skills. The project won the 2011 National Lottery Award for Education. From 2011 to 2016, Janet co-managed the lottery-funded 'Takin’ Charge Transition to Adulthood' project, which worked with 80 young people with DMD, aged between 14 and 19 years, and their families - supporting teenagers with DMD to be aspirational about their future. Through the community interest company, Decipha, Janet has worked with children, with a range of learning and behaviour difficulties, and led a Department for Education-funded Leadership programme for young adults with life-limiting impairments. Janet is currently involved in research, which is exploring the experience of young people with life-limiting impairments and their views on the new SEND reforms in a time of austerity. She has edited the book 'A Guide to Duchenne Muscular Dystrophy : Information and Advice for Teachers and Parents', which is free for families affected by DMD in the UK.
Sejal Thakrar Expand Sejal Thakrar is one of Duchenne UK’s Advocacy Support Officers - this is a voluntary role. Sejal has a son, Shiv, with Duchenne and they live in North West London. Shiv was diagnosed in April 2014. Following diagnosis, Sejal gave up her career as a Customer Intelligence Data Analyst within the Telecommunications sector. In January 2015, along with her husband Manoj, they set up ‘Smile with Shiv’ to work closely with the Duchenne community, in raising awareness and funds for Duchenne charities, as well as advocacy work. Sejal has used her experience as a Data Analyst to assist in the analysis of surveys, carried out as part of our community engagement work, to better understand what patients and caregivers want from care, research and clinical trials.
Rachel & Gareth Halpin Expand Rachel and Gareth's son, Harry, was just two and a half years old when he was diagnosed with Duchenne muscular dystrophy. At that time, they were expecting their second child. Luckily they had a healthy girl - Grace. Rachel decided not to return to her job in the Housing industry and to be a full-time mother. Gareth continues to run his own nightwear business. Gareth has taken part in the Duchenne Dash twice, and together, they continue to fundraise for Duchenne UK, in the hope that one day there will be a cure.
Jaspal Mann Expand Jaspal is the mum of Taran (11) and Kirath (9 - pictured) - Kirath was diagnosed with Duchenne muscular dystrophy just before his 4th birthday. Jaspal is an Equality and Diversity Practitioner with over 20 years experience in the field; after having graduated in Law, from the University of Manchester, she worked at the Commission for Racial Equality, advocating equality of opportunity for minority ethnic groups. She currently leads on Equalities at Coventry City Council. Since Kirath's diagnosis, Jaspal has championed the need for early access to medicines and was involved in lobbying for the approval of Translarna, for which Kirath was eligible. She is also a passionate advocate for improved psychological support for patients and families.
Nick and Kirsty Ohly Expand In July 2017, Nick and Kirsty received the heartbreaking news that both their sons, Owen (then 3 years old) and George (9 months), have Duchenne muscular dystrophy. Nick is an orthopaedic surgeon and Kirsty is a research nurse, both working in Glasgow. They are determined to raise awareness and funds for research into a cure for this devastating disease, and have set up Project GO with these aims. With the support of friends and family, they have raised over £60,000 in under 9 months. They are particularly focused on supporting the development of the DMD Hub, to expand clinical trial capacity for boys throughout the UK.
Andy Haycock Andy Haycock Expand Andrew is the father of William, who was diagnosed with Duchenne in 2016 at the early age of 1, after a random blood test. Andrew graduated from the University of Derby with a BA (Honours) Degree in History, before becoming a director of his family-run business. Since William's diagnosis, Andrew has thrown himself into fundraising, setting up William's Fund with Duchenne UK, to contribute in the quest to find meaningful treatments, and eventually a cure for this condition.
Anna Clark Expand Anna is mum to Jack (aged 5) and lives in Solihull with her husband, Marc. She studied Business Administration at Coventry University and also obtained her purchasing qualification, MCIPS. Anna has worked in the Healthcare industry for 9 years and is currently a Procurement Manager for pharmaceuticals. Anna and Marc set up Jack's Mission in March 2016 after their son Jack, then 2, was diagnosed with Duchenne, with the key objective of raising as much awareness and funds as possible to help to find a cure.
Laura Wright Expand Laura has two sons - Louis, age 6, and Jenson, age 5. Louis was diagnosed with DMD in December 2016. Laura and her husband Phil set up Lifting Louis (a family fund with Duchenne UK) to help support our work to end Duchenne. Laura and her family live in Lancashire and she has previously worked in the Travel industry.
Ana Chadwick Expand My name is Ana Chadwick - my son Gabriel was diagnosed with Duchenne muscular dystrophy just before his 4th birthday. With the amazing support of family and friends, I set up 'Hope for Gabriel'; a small charity run by kind volunteers, with the aim of raising funds to aid Duchenne research and to raise awareness of this disease. My main interest at the moment is to raise funds towards the expansion of clinical trial capacity in the UK. I believe this project will benefit everyone living with DMD, as well as giving more children/young adults with this disease the opportunity to take part in clinical trials. I also have great interest in the link between DMD and learning difficulties. I am currently doing some research in to supporting families dealing with the practical side of having a child with special educational needs.
Kerry Shippey Expand Kerryhas two boys, George and Jack. In November 2016 George was diagnosed with Duchenne at the age of 8. Kerry and her husband John have thrown themselves into raising awareness and fundraising for Duchenne charities, and set up ‘Cure4George’ (a family fund with Duchenne UK) to help support their work to end Duchenne. Kerry and her family live in Essex and she has over 30 years senior leadership and project management experience in the Banking industry. John retired from his career in Banking to become a full time Dad, and has supported groups for Duchenne Dads. John has completed the Prudential Ride London 3 times, and the family run an annual ‘Cure4George’ Golf day.
Alex Clarke Expand Alex and his wife Lisa have 2 boys, Ben 6 and Zak 2. They live in Sonning Common in Berkshire. Ben, who has Duchenne, was diagnosed in 2017 soon after his 4th Birthday when Zak was only 4 months old. Alex has spent more than 20 years creating and managing high performing teams in the service industry in a number of countries and across a range of sectors including hospitality, retail and guest services in the corporate world. Since diagnosis, Alex has reduced his working contract and invested time in supporting Duchenne Charities through fundraising and raising awareness on social media through the Unincorporated Charity, Ben vs Duchenne on Instagram, Facebook and Twitter, where he shares Ben's life experiences both medical and social. Alex and Ben vs Duchenne will be setting up a family fund to support Duchenne UK's investment into research.