Meet the Trustees
Meet the Trustees
At FOP Friends, we are incredibly fortunate to have a dedicated Board of Trustees, each bringing a broad range of skills and experiences. Together, they work together to develop a clear strategic vision, continuously striving for excellence and growth to best serve our families navigating life with an FOP or POH diagnosis.
Every trustee generously volunteers their expertise to benefit FOP Friends, dedicating their time and effort to our cause. The trustees meet regularly to ensure that our charity maintains the highest professional standards and remains aligned with our charitable objectives as outlined in our deed.
We are thankful for their unwavering commitment, dedication and enthusiasm.
Chris Bedford-Gay (Founding Trustee)
BSc. Hons. Computing for Business, University of Northumbria
In 2009 Chris’ world fell apart when Oliver, was diagnosed with the FOP. He quickly became an expert in FOP, learning as much as he could to best care for his son. Since it was so incredibly rare, none of the healthcare professionals had heard of it.
Wanting to do more and make a real difference, Chris was elected to the Board of the IFOPA, a position he held from 2011 to 2022. Chris soon realised that if he was to be able to make any true impact, he needed to set up a registered charity. Along with other family members, Chris founded FOP Friends, the UK’s only charity dedicated to FOP: both funding research and supporting families. Chris was incredibly proud when FOP Friends celebrated its 10th year as a charity in 2022.
Although Chris’s term on the Board of the IFOPA came to an end in 2022, he continues to chair the International Presidents’ Council for FOP, a group which brings together all the national FOP organisations from around the world.
In addition to this, Chris is involved in several other patient group projects and initiatives, both for FOP and the wider community of rare disease as a whole. He is involved at Beacon for Rare Diseases as part of the patient group engagement committee, and regularly sits on panel discussions as a patient expert and advocate. Chris’ perspective is rather rare in that he is both a patient group representative but more importantly he is a dad – and that gives him additional insights into the many challenges those living with a rare disease face. Chris regularly gives presentations to pharmaceutical companies as well as participating in CME modules giving rare parents a voice.
Chris is working with MPs in Parliament, across parties, following a debate in the House of Commons on the need for funding into FOP research. He is also in discussions with the DHSC. Chris is a published author on several FOP papers and was instrumental to the success of the world-wide FOP Flare-up study.
However busy Chris may appear, being a trustee of FOP Friends is not actually his day job. Chris is a highly skilled software developer and is currently the CTO of Skillsarena, a skills-testing company. His extensive experience in running his own software companies for the past 25 years has put him in good stead for the administrative demands of running a registered charity – writing the Annual Report being one of them!
Chris is also involved in Manchester Round Table and Manchester 41 Club. Chris enjoys a range of sports and if he’s not at his desk then he can usually be found at his local gym! Inspired by his two younger boys, Chris has recently taken up lacrosse – although it may be some time before he’s as good as them! Chris looks forward to his holidays with his family, with road-trips around America being his favourite way to spend summers.
Alison Acosta Bedford (Founding Trustee)
BSc. Hons. Mathematics, University of Sheffield, CGMA Chartered Institute of Management Accountants
Alison is auntie to Oliver and one of the founding trustees. The day our family learned of Oliver’s diagnosis is one she’ll never forget. He was the first baby of the family, and noone was expecting anything like this.
Alison is a Chartered Management Accountant and currently works for a biomedical database and research company. Part of her role is to assist with the financial accounts of the charity, along with other administrative tasks, and supporting fundraising efforts. Alison chairs the trustee meetings and sets the agendas. She also oversees day-to-day staffing and operations of the charity.
In her spare time, Alison enjoys long walks with her kids Eddie and Elise, and their furry friend Quito the dog. She is also a lacrosse mum and can be found cheering both Eddie and Elise on from the sidelines.
Alison is incredibly proud of what the charity has become, both as a support network for Oliver and his family, but also for the other families affected by FOP. She is proud to call many of these people her friends. In fact, a few years ago, she literally walked over hot coals for them!
Although Oliver now towers over Alison, she is desperate for the day when there is a treatment and a cure for her little nephew.
Rachel Bedford (Founding Trustee)
BSc. Hons. German and Law, University of Surrey
Rachel is auntie to Oliver and a founding trustee of FOP Friends. Rachel is passionate about her role at the charity and is driven to find a treatment and a cure for her nephew. She works as Head of Events, Training and Sponsorship for an education association, developing events and training programmes for the Further Education sector. She has worked in events for over 22 years and is pleased to be able to put her experience and expertise to good use, organising the biennial FOP Friends Conference and Family Gathering. Rachel looks to use her personal drive to work hard alongside fellow trustees and the whole of the FOP Community to find a cure for FOP.
Rachel is mum to three boys who keep her more than busy. In her spare time, Rachel enjoys running and baking.
Rachel tells us, “Having been a trustee for over 10 years now you’d think it would be easy to sum up what it’s all about, but the role is so varied and makes so many different demands on your time! I’ve been called on to use all sorts of skills I didn’t know I had! It truly has been amazingly rewarding. The best part for me on this journey to achieving our goal of finding a cure for FOP, has been meeting the most wonderful people along the way. I just hope the cure is found as soon as possible to end the pain, worry and suffering of our friends. With clinical trials and further medical and pharmaceutical research taking place, that hope is real.”
Helen Bedford-Gay BEM
BA (Ed.) QTS. University of Durham
When Oliver was diagnosed, it shattered Helen’s world. At the time, there was no charity in the UK so there was no support, information or network. Overnight, Helen and Chris had to become experts and advocates for their little boy.
Helen is the ‘behind the scenes’ person for the charity. She manages everything from writing thank you letters and newsletters, to organising conferences and events. If you can’t find Helen at her desk, then she may well be in the line at the post office, such is the varied nature of her role. She is responsible for the website, socials, graphic design, newsletter…the list goes on! Currently, she is also on the Board of the IFOPA.
Prior to running the charity, Helen was a primary school teacher – a career she misses dearly and hopes to return to one day. Helen credits her training and the skills she learned as a teacher for enabling her to juggle the many tasks she faces in a day.
Helen is the first person people speak to when they either suspect a diagnosis or have had it confirms. It’s a challenging role as you want to give them hope at the most heartbreaking time. As a charity, we endeavour to offer families the friendship and community which wasn’t around when Oliver was diagnosed. Helen welcomes them to the community and offers parents a listening ear and can signpost them to other services. She wants families to know that they are not alone on this journey.
The highlight of Helen’s time at the Charity was when she was awarded at British Empire Medal in Queen Elizabeth’s Jubilee Honours list in 2022. She was honoured to accept the award for her family, who have made so many sacrifices as they face the challenges of living with FOP together.
When Helen isn’t working, she is either paper crafting, baking, or standing by the side of a lacrosse pitch embarrassing Oliver’s brothers – Leo and Harry! She continues to be delighted by how all her boys are growing up and she enjoys celebrating all their successes.
Helen explains, “I never thought my life would turn out this way, but when life throws you a curve ball you just have to adapt. We have faced so many challenges so far, both as a family and a charity, but we have also had much joy and laughter. We have had the opportunity to meet some of the most wonderful people. We have made many happy memories but have also faced many heart-breaking and dark times along the way too. It never ceases to amaze me how strong the families living with FOP are. I know I couldn’t do what I do without their support. But hope is on the horizon and that’s what drives us. Our children are amazing and we won’t stop until we find a treatment for everyone affected by FOP.
John Lever
Clarity Comms.
John considers himself as the ‘behind the scenes’ trustee! John had previously worked with Chris on other project, so when he heard about Oliver’s diagnosis and learned more about the condition, he wanted to do what he could to help.
John was involved in one of FOP Friends’ (then Friends of Oliver) first projects: an animation to raise awareness of FOP and Oliver’s family’s campaign to find a treatment and a cure for everyone living with FOP. John produced a video through his creative company, claritycomms.com, engaging Stephen Fry to provide the voice over and persuading Stephen to subsequently tweet to his millions of followers. It was the charity’s first attempt at raising a awareness and it certainly made an impact!
Since then, John has continued to collaborate with Chris to develop projects to benefit the FOP community. When FOP Friends decided to hold an in-person conference in 2022, after the pandemic, John liaised with Stephen Fry to produce a welcome video and cameo to to open the 2022 Conference and Family Gathering. John recognised how important the event meant to the community, and the impact of being apart through the pandemic. It was great to be able to bring a surprise to the proceedings and give the event the grand grand opening it deserved.
John is now exploring some exciting innovative ideas to help FOP Friends raise awareness and funding. He considers it a privilege to be part of such an inspiring team with such an important mission.
Nicky Muller
BA Hons. Travel Management, University of Brighton
Nicky, a dedicated advocate for FOP awareness and research, draws inspiration from her personal journey with her daughter Isla, one of the youngest FOP diagnoses. Beyond the initial shock, Nicky channels her energy into impactful fundraising and helping other FOP families.
As a part-time Digital Marketing Manager for Avaya, she utilises her skills to garner support from prominent companies. Nicky holds a 1st Class Management degree from the University of Brighton and continually enhances her expertise through various marketing courses, showcasing a commitment to staying at the forefront of industry trends. With over two decades of experience in B2B marketing for international IT companies, Nicky possesses a robust skill set encompassing digital marketing, event management, content creation, and social media. Her passion and professional acumen make her a valuable asset to FOP Friends.
Nicky shares, “FOP Friends is a charity that pulls at my heart strings and gives me hope for my daughter who has FOP. They were there for our family in the weeks prior to diagnosis and now almost 9 years later. When asked to join the small yet mighty team as a Trustee I was nervous but soon realised we are the perfect mix of people committed to the cause and bring a range of perspectives, experience and outlooks. I would encourage others to take the leap for a cause that truly matters to them.”
Dr Andrew J Rankin PhD. DPM
Andrew is the newest trustee to the Board. He has over 25 years of biotech and pharmaceutical industry experience leading the development of chemical and biological medicines from first in human, through all stages of patient clinical trials to global regulatory approval and launch of new medicines in Pain, CNS, CV/Metabolism, Auto-Immune, Oncology, Biosimilars and Rare Diseases. Previous to his industry career he was a physiology professor in Canadian medical schools before joining industry with Pfizer in the UK.
Andrew then moved on to working for smaller and specialist companies in Europe and the USA, from heading clinical development at Teva to global development head for rare disease programs at Alexion and Regeneron, including for FOP where he has got to know the global community over the last 7 years. Andrew has had the good fortune of leading five new medicines to regulatory approval, including three in rare diseases.
In addition to a professional passion for developing medicines and supporting the rare disease patient community, Andrew has been personally involved with a child severely impacted by a rare disease and has served as a Board Member for the KAT6 Foundation for the past five years; particularly focusing on new research into the condition and potential therapies.
Now retired from full time work, Andrew is looking forward to using his wealth of medical science and drug development experience to support FOP Friends in their mission to find a treatment and a cure. He is excited to be getting involved in new opportunities and getting to know the community in the UK.
Andrew is delighting in spending quality time with his family ones, especially his grandchildren. Additionally, he is enjoying having the time to travel, venturing to new destinations and immersing himself in diverse cultures and experiences.
