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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 studied Politics and Parliamentary Studies at the University of Leeds. During my time there I became more involved in supporting the work of various charities, due to my belief in doing what I can to make a positive difference to people’s lives. After university I worked in various roles in campaigning both inside and outside of Parliament, including for an MP.
I see my role as Campaigns Officer as ensuring the Duchenne Community has a voice that is heard and acted on by those in power, in a way that makes a real difference in improving the lives of those with Duchenne.
I am here to support the Duchenne community, so if there is anything I can do to ensure your voice is heard please do contact me!Contact Stephen:
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:
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 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:
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:
As the former Chair of the Board of Trustees, I am married and is mum to Isaac, who is living with Duchenne. Based in Oxford, I am a fully qualified teacher and freelance educational writer.
Since Isaac was diagnosed, I have been on a career break. Our family experienced a lot of issues with Isaac’s schooling, as well as the other practicalities of living with DMD. Therefore, anything I can do to hasten effective treatment for DMD, as well as getting the right standards of care for our sons, I’m there.Contact Kathy:
Having spent nearly 30 years in Banking, specialising as a Sales and Compliance Manager of Personal Financial Advisers, I have taken a career break to focus on my family.
Married to Leslie, an aircraft design engineer, we have 2 children, Melissa and Ashley and live in East Yorkshire. Ashley was diagnosed with DMD just prior to his 7th birthday in 2014. I first heard of Action Duchenne following a recommendation by a friend whilst sharing fund raising ideas.
November 2014 was the first Action Duchenne Annual Conference that I attended, and, learning more about the condition in 2 days than I had in the 4 months since diagnosis, decided I would like further involvement with Action Duchenne.Contact Lesley:
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.
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.