As Patient Registry Co-ordinator, Wesley is responsible for facilitating the activities and functions of the UK Rett Syndrome Patient Registry at Reverse Rett, with a particular emphasis on ensuring that the registry is up to date, accurate and complies with current data protection regulations at all times.
Wesley is first line contact for families joining the Registry and will be working with registered families on an on-going basis to keep them updated re registry activities or other relevant developments of interest.
Contributing to the growth, development and implementation of the UK Rett Syndrome Patient Registry at Reverse Rett is a critical task in terms of working to give UK patients access to emerging treatments and ultimately improving outcomes for people with Rett Syndrome worldwide.
Wesley is the newest member of the Reverse Rett team. He joined the organisation after recently graduating from Manchester Metropolitan University with a BA in photography.
Although photography is a passion and a consistent part of Wesley’s life, he has always been interested in working for a non-profit organisation. As a small, national and very driven organisation, Reverse Rett provides a good all round introduction to the third sector.
Wesley says, ‘It’s not only a privilege to be working for such a great charity, it’s also exciting to be part of what could be a major breakthrough in finding a cure for a life-altering genetic disorders.’
Lluis first came into contact with Reverse Rett through good friend and member of the Professional Advisory Board, David Greatrex. Having heard a great deal about the charity from David, Lluis was extremely happy to get involved when the opportunity arose. In addition to IT/analytics, Lluis has a diverse background as both a social worker (homeless services, youth work) and as a music practitioner (visiting lecturer at the Birmingham Conservatoire). He studied an MPhil at University of Cambridge, where he now lives.
Hayley-Rose started working as a freelance bookkeeper in June 2010 after relocating to Manchester from Leeds and in preparation for starting her family.
After quickly building a successful client base, Hayley-Rose was awarded runner up in the 2014 International Association of Book-keepers, 'Bookkeeper of the year' awards for the UK; an award which recognises IAB members whose impeccable bookkeeping skills help clients efficiently manage their accounts.
Hayley-Rose is currently studying for her accountancy exams. As well as running her own business, she has two little boys aged 1.5 and 3 years old who keep her very busy.
Hayley-Rose enjoys spending time with her family and runs for fun, a new concept to all of us at Reverse Rett!
She has taken part in many running events, including the Manchester 10K every year since 2011, only missing 2012 when she was heavily pregnant.
Hayley-Rose works in the Reverse Rett office every Thursday but can be contacted via email re book-keeping related issues throughout the week.
Beth was first launched into the world of Rett Syndrome when her little girl, Hannah, was diagnosed in February 2010. Beth immediately began fundraising for Rett charities, involving friends, family and the wider community in any way she could.
But as Hannah's condition continued to progress, Beth's commitment to giving Hannah a better future deepened her involvement with Reverse Rett.
Since 2011, Beth has been a serial fundraiser for Reverse Rett, taking part in and organising walks, sales, quizzes, speeches, parties, coffee mornings, concerts, hypnosis, auctions, bag-packs and anything else she could think of to raise funds to speed treatment.
Beth attended a Changemakers workshop at Reverse Rett in 2012 and since then has also been involved with the work of the organisation at another level; contributing to the development of written materials for the Parent 2 Parent project, teaching at workshops and helping to develop nationwide campaigns, such as the Change is Possible Virtual Runs.
Before Rett Syndrome, Beth travelled, worked and lived in Sweden, Australia and the Czech Republic before settling back in the UK in 2008. She was a secondary school English teacher between 2004 and 2016, but has now committed to a full-time career working for Reverse Rett.
Beth writes a blog about life with Rett Syndrome which is published by the Huffington Post.
She lives in Surrey with her husband, Hannah and two younger sons.
'I feel privileged and excited to now be working for Reverse Rett and know that this is the most important job, besides being a mum, which I will ever do. I already know how passionate and committed our supporters are, and feel honoured to be working with people who share the same goal, and determination to reach that goal, as I have.'
As Fundraising Manager, Andy has overall responsibility for all charity-wide community fundraising including initial and on-going fundraiser care, driving the development of team and charity-wide challenges and campaigns. He plans and implements the charity's social media strategy, directly providing majority content for both Facebook and Twitter on a 24/7 basis and has overall responsibility for all dynamic content on the website, including both the 'news' and 'events' sections. Andy runs the Reverse Rett Changemakers Project and works closely with the Changemakers to enhance their ability to impact the work of the charity at large.
Andy's drive to fundraise for Rett Syndrome research began the day his then 2 year old daughter, Beth, was diagnosed with Rett Syndrome in 2002. As a PGA Golf Professional, Andy did his first fundraising challenge through a 24 hour Golf Marathon, drawing local support from friends and family and went on to complete over 20 active challenges, including running 3 Marathons, climbing 27 mountains, 2 naked calendars and 5 long distance cycling challenges (clothed). In 2010, Andy co-founded Reverse Rett and now works daily to motivate other families and supporters to do whatever they can to give our girls a chance at a better future.
Andy still serves on the Board of Trustees for Reverse Rett. His immovable commitment to driving research out of the lab into treatment for his daughter has been integral to the charity's ever-growing impact on Rett Syndrome research. With 2 challenges completed in 2017 he continues to be a source of inspiration and exasperation to all.
As Executive Director, Rachael is responsible for implementing the charity’s strategic priorities and for the day-to-day running of the organisation, including communications, fundraising and administration.
Two years after the reversal experiments of 2007, Rachael became frustrated that research developments weren’t happening fast enough to make a difference for her own teenage daughter with Rett and she spearheaded the launch of Reverse Rett from her kitchen counter in a small cottage in Buckinghamshire. Since then Rachael has led the charity in delivering over $5 million to Rett Syndrome research.
Rachael now serves on the Board of the US based Rett Syndrome Research Trust. As well as working to ensure that Reverse Rett can continue to grow and further impact the speed at which treatment can be developed, Rachael also leads on the ground engagement with UK authorities and organisations who can influence the transition of treatment from the lab, into the lives of patients with Rett Syndrome in the UK.
Rachael is a member of the Patient Engagment Group at Genetic Alliance UK who are working to impact the implementation of the UK Strategy for Rare Diseases and also represents Reverse Rett as a member of the Patient Involvement Group at NICE. She has served on the Just Giving Advisory Board for small to medium charities since 2012.
Prior to founding Reverse Rett, Rachael wrote a novel (unpublished) and obtained an MA with Distinction in Creative Writing from Bath Spa University. She spent five years living in the USA, where she worked as an advocate for children with disabilities.
Rachael welcomes contacts from families at any time:
Neil’s daughter, Ciara was diagnosed with Rett Syndrome in September 2011, the day before her 2nd birthday. Neil had never heard of Rett Syndrome but soon decided he wanted to do something positive and began planning what was the first of many super human cycling challenges.
His first challenge was the English Coast to Coast in 2012 followed by epic rides from Chester to Rome in 2013, 14 countries in 14 days in 2014 and Ellesmere Port (Ciara’s home town) to Venice in just 7 days in 2015. He has had amazing support from family and friends along the way and everybody in the Rett community has marvelled at the stamina of Team Ciara.
In 2016 Neil set up Ciara’s Centurions with the aim of a 100 people joining up to raise money that will drive research into treatments and a cure for our girls. In September 2016, to mark the 5th anniversary of Ciara’s diagnosis he will return to the bike to attempt a non-stop 500 mile ride…The Ciara Fowler 500.
Neil lives with wife, Gayle and children, Michael, Ciara and Sofia in Ellesmere Port and on top of his relentless fundraising works as a senior Orthopaedic Physiotherapist at the Countess of Chester Hospital. Neil says:
‘Since becoming a parent I have always said that the one man a girl should be able to count on, every single day of her life, is her Daddy. Not being able to help Ciara as I would like and to ‘make things right for her’, is something I struggle with daily. Reverse Rett gave me hope, at what was without doubt the darkest point of my life. I feel an immense sense of loyalty to their cause and am humbled to have been asked to formally join the Board of Trustees. All I can promise is that I will continue to do my bit to fight Rett Syndrome, for as long as it takes!’
Ortensia's daughter, Olivia, was diagnosed in 2003 at the age of two. She immediately began fundraising for Rett Charities in Italy and the UK and also got her family and friends involved.
Ortensia has been one of the major factors behind the success our annual London event since Reverse Rett was formed in 2010.
Before becoming a full time Mum of three, Ortensia worked and lived in Italy and travelled in Asia and South America before settling in England. She has been a Montessori teacher since 1996 and she has a degree in Literature at the University of Macerata.
Ortensia enjoys travelling, reading, cooking, playing bridge and tennis and skiing. I like to travel, reading,cooking, playing bridge, tennis and skiing. She lives in London with her husband Nick and two younger sons.
'Olivia is my first child and I always says she is my greatest joy and my deepest heartache. When Olivia was two and we had the diagnosis I so desperately wanted to make her better. I love my daughter so much that it hurts a lot and frequently, we have two younger children and there have been so many stretches when it feels like we are losing our family identity simple because of Rett Syndrome. I firmly believe in a better future and a cure for our girls, my daughter taught me to never give up. I am delighted to be part of Reverse Rett.'
John Sharpe studied Biological Science at Liverpool University before joining Unilever. His career in marketing, advertising and general management in Unilever spanned 37 years and saw him managing famous brands like Persil, Comfort, Domestos, Dove, Ponds, Sure, Lynx, Signal, Birds Eye Frozen Foods, Magnum and Cornetto. He worked in South Africa, the US, the Phillipines, Switzerland and the UK, before finally being in charge of Unilever's Home and Personal Care Business Group for Europe based in Brussels.
In his retirement his interests are travel, photography, sculpture and Family. He has three children, settled with families, and Amber, one of his five grandchildren, was diagnosed with Rett Syndrome in August 2012 when she was 2 years old. He immediately learned all he could about Rett Syndrome and discovered the hope that exists for little girls through the reversal experiment and the ongoing research program.
John was a member of our PAB for twelve months before joining the Board in April 2014 and taking over as Chair of Trustees in September 2014.
In his new role he hopes his organisational experience will enable him to help strengthen the Reverse Rett organisation so it can continue the exceptional growth that they have achieved in their first four years.
As Founder and Executive Director of Rett Syndrome Research Trust, Monica was the first port-of-call for UK families searching for routes to accelerate treatment for Rett Syndrome. Monica has been a relentless driving force behind Rett research since her two year old daughter was diagnosed with the condition in 1998, both as co-founder and Scientific Director of the Rett Syndrome Research Foundation (now IRSF), and subsequently as Executive Director of the US based Rett Syndrome Research Trust. Monica’s involvement with Reverse Rett, both as a co-founder and a trustee, galvanises the partnership between the organisations, weaving continuity and synchronicity in our combined efforts to drive the science forward.
'It is widely acknowledged that Monica Coenraads, more than any other single person, is responsible for the surge in Rett research. Her spectacular success is based on relentless and informed networking in research circles plus a single-minded focus on the ultimate goal - a cure for Rett Syndrome. She has inspired scientists to appreciate that goal and share it. It is difficult to over-estimate Monica's impact in catapulting Rett Syndrome research to the forefront of bio-medical research.' -Adrian P. Bird, Ph.D, RSRT Trustee.
Helen’s daughter, Lauren, was diagnosed with Rett Syndrome in late 2009, right around the time that Reverse Rett was forming. She involved herself with the charity from the outset, doing anything and everything she could to help the charity grow and succeed. Helen became a Trustee of Reverse Rett in May 2012.
To celebrate her 40th birthday in 2013, Helen took her fundraising efforts to new levels, pulling together a huge team of 56 people who collectively raised almost £50,000 for Reverse Rett.
With her professional background in marketing and event management, Helen has naturally taken the lead in organisation of the Annual Reverse Rett London, our biggest fundraising event of the year. If you can support this event in any way, or are interested in holding an event of your own, please contact Helen.
Jocelyn earned her PhD in neurobiology from Harvard Medical School in 2013. Her thesis work with Dr. Michela Fagiolini investigated the neurobiological basis of autism using genetic mouse models.
After completing this work, she wanted to find a way to connect her research to the clinic and to feel that she was making more of a difference. Fortunately the opportunity arose to join a project focused on how the brain processes visual information in Rett Syndrome. She made the leap and joined Dr. Charles Nelson’s lab at Boston Children’s Hospital to work on the project as a postdoctoral fellow, switching from mouse work to human research.
The experience of working on this project was life changing for Jocelyn and ignited a passion to help these incredible girls and their families. Results from the study were published in the November issue of Annals of Neurology and the work is still ongoing.
Jocelyn moved to London in the summer of 2015 with her husband Rodney and their 2-year-old daughter Amelie. She is continuing to work on the Rett Syndrome project remotely and is also excited to join the Rett community in the UK. She hopes to help communicate scientific research to families through the Reverse Rett website.
Sarah's daughter, Amber, was diagnosed in 2012 at the age of two. It took time for her to research the condition as they were told that there were no treatments. She found it hard to read anything about Rett for months. Amber's Grandfather however did do the research. He found the one charity that gave her family hope and strength - a pioneering charity trying to find a real solution called Reverse Rett. Since then her family have become increasingly involved in volunteering their help.
She was very happy to take on the role of Grants Fundraiser in October 2014 which she does from her home in Tadworth, Surrey. Before becoming a full-time mum of three she worked in public relations for five years and as a secondary school geography teacher for seven years.
If you know of any Trusts, Foundations or any organisation that may be able to help Reverse Rett please contact email@example.com.