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Having been an integral part of the Action Duchenne team for the past five years, I feel honoured to have been appointed CEO of Action Duchenne have previously held the position of Director of Research, and before that, Regional Development Officer.
With a background in scientific research and a broad range of advocacy and communication skills, I strive to be at the forefront of cutting edge advances in Duchenne and Becker Muscular Dystrophy and work with other key stakeholders in achieving this aim.Contact Diana:
Since joining Action Duchenne in August 2010, I liaise with Duchenne families on a daily basis to ensure they have the most up to date information regarding standards of care and research. Alongside helping people in their fundraising efforts, I also organise Action Duchenne’s own fundraising events.
Prior to studying law at the University of Birmingham I took 6 months out to teach in East Africa. As a graduate, I spent 3 years working in the Commercial Banking sector in Bristol. Following this, I moved to London and volunteered in the Hackney Citizens Advice Bureau before joining AD.Contact Iain:
I have been the DMD Registry Curator at Action Duchenne since October 2007 and I am very excited by my new role as Action Duchenne Advocate. In 2016 I qualified as a EUPATI fellow, to empower patients with a better understanding of their condition, and the drug development process.
Having experienced Duchenne first hand, I want to bring my wealth of experience about living with Duchenne to advise families on services such as schooling, housing adaptations, social care, hospitals, wheelchairs, travelling and attending college and university.Contact Angela:
As Action Duchenne’s longest serving member of staff, I started as an Administrator in 2007 and am now the Finance Manager.
I particularly enjoy processing all the donations made by our amazing supporters!Contact Kelly:
I’m Mum to Isaac, who lives with Duchenne, I’ve been an active campaigner with Action Duchenne since 2011. Having found the support of the Duchenne community at the Action Duchenne conference in 2008, several months after Isaac was diagnosed, the annual conference helped my husband Stuart and me through the next couple of years as we reshaped our lives with the reality of Duchenne.
Determined to fight the condition, in 2011 I went with Action Duchenne to Romania, Italy, and Latvia, as part of an international delegation to develop best practice in empowering people living with Duchenne. I joined the charity’s board of trustees and became an active campaigner.
Other work has included devising the ‘Joining the Dots’ campaign to realise Action Duchenne’s longstanding vision of a Duchenne specialist centre within two hours travelling distance of everyone in the UK, and working alongside colleagues in Action Duchenne and other charities on the Newcastle Plan to increase DMD clinical trial capacity in the UK.Contact Kathy:
I joined the Action Duchenne team following 6 years in the face-to-face fundraising industry. I particularly enjoy working with people and providing support and resources for our families in their fundraising endeavours. Originally from Yorkshire, in my free time I enjoy getting out of the city and into the countryside wherever possible.
If you are planning a fundraising event or would like any tips or advice, I would love to hear from you!Contact Helen:
I have been involved with Action Duchenne since my son Jude’s diagnosis in 2013. I have taken part in many of the Action Duchenne fundraising events including the Love Run and Nightrider challenge, as well as running my own events with family and friends.
The Action Duchenne team were a huge support to me and my family following Jude’s diagnosis and I would like to offer that same support to families within the community.
Whether it be sharing experiences, thoughts or fundraising ideas then please get in touch.
Together we can make a difference.Contact Sam:
After a successful career in the Corporate world, I am taking the leap into the not-for-profit sector to use my skills to help make a difference to Duchenne families.
Since our second son, Samson’s Duchenne diagnosis in November 2015, we have gone through the first stage of our journey and are now actively fundraising as a family. I am helping our network to get involved in a variety of fundraising activities, from Marathons to music events, coffee mornings to Tough Mudders.
My aim is to help facilitate the families within the Duchenne community, to offer them support and to advise them on how they too can make use of their connections and network to make a real difference through fundraising with Action Duchenne.
Through my corporate network, I will be raising awareness of Action Duchenne and advising organisations on effective ways in which to become involved with our amazing community.Contact Lynnette:
As a BA History graduate from the University of Kent, at University I was on the committee for two consecutive years for the UKC Athletics & XC Club and has coordinated two running challenges.
At the age of 21, I set up a social enterprise ALive, which fundraises for various charities through performance based events.
In my spare time I enjoy reading and going to live music events.
As a committed fundraiser and a passionate runner, I am very enthusiastic about networking, maintaining relationships with fundraisers/volunteers and improving the lives of people with Duchenne.
If you have any challenge ideas and/or would like to do an event for Action Duchenne then please get in contact with me!Contact Paul:
I have been a supporter of Action Duchenne for many years and have a 20 year old son, Phillip, living with Duchenne. As a legal advisor and barrister, I have also acted as an advocate for many families living with Duchenne, fighting for the rights for those living with Duchenne.Contact Janet:
I live in Barnet with Abbie and our 8 year old son Thomas, having been a chartered Town Planner since 1998 working for a local authority in Hertfordshire.
I have been a trustee of Action Duchenne since 2008, soon after Thomas was diagnosed with DMD and have been treasurer of the charity for around half of that time. Now sitting on the research sub-committee, I advise the Head of Research. Additionally I am a member of the National Advocacy Council.Contact Mark:
Hi, I’m Lesley Wegg, married to Leslie Wegg and we have two children, Melissa and Ashley. We live in East Yorkshire.
Ashley was diagnosed with Duchenne just before his 7th birthday in July 2014. I attended my first Action Duchenne Conference four months later and was astounded with the amount of information I learnt. The Conference is now a highlight of my year, listening to the experts about potential treatments and hearing how the projects Action Duchenne has funded are progressing.
It is also lovely to meet Action Duchenne supporters and spend time with families facing the same challenges.
I work full time as Head of Operations at Beverley Building Society.
I have been a Trustee for Action Duchenne since February 2015 and with 30 years of Banking experience, I sit on The Finance Committee. I am an active Fundraiser myself and Chair The Fund Raising Committee. We welcome all kinds of new fund raising ideas – the quirkier the better, so please do get in touch with your ideas!
After reading for an Honours B.Sc. in Biochemistry at the University of Leeds, followed by an M.Sc. in Microbiology at the Imperial College, University of London, I took a position at the Central Public Health Laboratory where I submitted for a Ph.D. to the University of London.
Married to Shirley, with three children, two sons and a daughter, my Grandson has Duchenne muscular dystrophy and I have been on a steep learning curve, trying to understand the condition and how to help others in this situation.Contact Karl:
I am mother to William (4) and Phoebe (1) with my husband Matt. We live in a lovely village in north Hertfordshire.
William was diagnosed with Duchenne muscular dystrophy in January 2016 at the age of just 3. I had no prior knowledge of Duchenne and through support at GOSH I found Action Duchenne. Friends and family have actively fundraised over the past year for the charity in William’s name.
Myself and Matt attended the conference in November 2016 and from that I decided the time was right and I wanted to be part of the charity as a trustee, giving my time to help our boys.
I am a full time mother at present, however have professional experience in project and events management.
Father to Katie, Cormac and Ronan, we found out that Cormac had DMD in 2014 after trying to get to the bottom of his antisocial behaviour. Cormac has a nonsense mutation and this led to working with Action Duchenne and other DMD charities to fight for the approval of Translarna in Scotland. Cormac was the first patient to be prescribed Translarna through the NHS in the UK via an Individual Patient Funding Request, which is how he continues to receive the drug today.
Gary said: “I’m very excited to be ask to work with Diana, her team and the whole Duchenne community in helping to advise where technology can help to enhance our lives. I am a strong advocate for the use of technology in helping to make patients and carers life easier and hope to use my experience within IT to accelerate this in an increasingly digital world. Please send any ideas you have to me, I’m sure there’s lots out there.”Contact Gary:
I am Mummy to two children – daughter April and little brother, Fraser. I work full-time in London as a Company Secretary for a Lloyd’s of London Underwriting Agency and also have a keen interest in genetics and science, working with Genomics England as part of their 100,000 Genomes Project. In 2014 at the age of just 11 months, Fraser was diagnosed with Duchenne – we have no family history and neither myself or April carry the mutated gene. I am in a unique situation with Fraser as he has not presented with Duchenne like other boys – he is yet to stand by himself or take an independent step leaving him full-time wheelchair dependent. Clinicians have never seen a Duchenne boy like Fraser before.
I am an active advocate of the Duchenne community, fundraising for non-mutation specific research and raising awareness for all. I have a good personal relationship with all Duchenne charities and always encourage our unity in working together to beat this. I have a voice and I speak out for my son and all others like him because I want these children to grow up and have the lives they deserve. I am always here with an ear if you would like to get in touch.
I live in Birmingham with my wife Vicky & our children Chanel & Ryan both aged 23, Aaron aged 17 & Jack aged 15. Both Aaron & Jack have DMD; Vicky & Chanel are both carriers of the Duchenne gene.
We have been involved with Action Duchenne by means of attending conferences both in London & Hereward College in Coventry & the’ Takin’ Charge’ group of which both Aaron & Jack are part of, we have made a considerable amount of friends whom are all going through the same journey in life as we are, all through the work of Action Duchenne.
My decision to become a trustee is that I would like to be a part of an organization that is at the forefront of researching a cure for all of our boys with DMD, has a strong standing within parliament and one that supports its members. I would like to give back to Action Duchenne some of my time as they have done for my family over the years, mostly I would like to make a difference for all boys with DMD.
I have experience of living with DMD such as the adaptation process, I can act as a contact for families in the Birmingham & surrounding areas, currently our boys are going through the new EHCP assessment so I could advise on the process and any discrepancies in the process that may need to be addressed. As a self-employed Locksmith & previously a Supervisor for a busy Distribution Centre I bring good communication & organizational skills more important I am a people person who is passionate to get what our boys deserve.Contact Wayne:
After graduating with a BSc in Molecular Biology and Biotechnology before undertaking a one-year research assistant position at Guy’s and St Thomas’ Hospital, since 2002 I have worked in the DNA Diagnostic Laboratory at Guy’s as a Clinical Scientist, helping test patients with genetic disorders including DMD.
Currently volunteering with the DMD Registry, I am a member of the DMD Registry Steering Committee, recently joining the Action Duchenne Research Sub-Committee as a volunteer.