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 when 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.
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.
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. In 2005 until 2012 he was a member of the MDEX Consortium SAB that 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.
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 at GSK is Therapeutic Area Head in Global Value Evidence and Outcomes. Her son, Dom has DMD.
Lisa Kuhwald Lisa Kuhwald Expand 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.
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.
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.
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 in lobbying 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 and giving information and advice in independent living. Vici is also a founder and trustee of Duchenne Now. Vici is committed to seeing a treatment for all in the shortest time frame possible. She is particularly keen to see non ambulant trials set up.
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.
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.
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 work 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 would like to see more trials open to non ambulant boys and men.
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 – 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 and which won the 2011 National Lottery Award for Education. From 2011-2016 Janet co-managed the lottery-funded Takin’ Charge Transition to Adulthood project which worked with 80 young people with DMD aged 14 – 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 that is exploring the experience of young people with life limiting impairments and their views on 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.
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.
Sejal Thakrar Expand Sejal Thakrar 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, funds for Duchenne charities and 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.