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Hazel Beiny

Community Engagement

Hazel has recently joined the team at Reverse Rett with a focus on Community Engagement. Hazel has a granddaughter, Lotta, who has Rett Syndrome and understands the difficulties and issues surrounding our chidren and their families.

Hazel previously worked for the Association of Jewish Refugees - a charity where she organised events for the diminishing number of refugees of Nazi atrocities. She started her career in the entertainment industry where for some 25 years she assisted with the representation of many celebrities.

Hazel says, 'I am very much looking forward to bringing my experience of the charity sector to Reverse Rett, and to helping conceptualise and arrange events designed to be enjoyable, educational, fun and above all, a source of very much needed funds.'

Oliver Perkins

Communications and Development Associate

Oli has joined to Reverse Rett to support on communications and fundraising from trusts and foundations. He has previously worked in development at the Natural History Museum and Cambridge University where he worked on fundraising for Alzheimer's research amongst other things. He plays cricket, used to be a professional jazz pianist, and is currently taking an MSc part-time in environmental science.

'It's really exciting to have joined such a focused and effective charity. With so many important projects underway, there's lots of scope to bring new supporters on board, and I'm enjoying trying to make that happen.'
 

Wesley Havill

Patient Registry Co-ordinator

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 disorder.’

 

Hayley-Rose Hunter

Book-keeper

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.

hayley-rose@reverserett.org.uk

 

Beth Johnsson

Events and Campaigns Co-ordinator (Currently on Maternity Leave)

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.'

 

Andy Stevenson

Fundraising Manager, Co-Founder, Trustee

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. Since the first UK clinical trial for Rett Syndrome began at King's College Hospital in April 2017, Andy has also been liaising closely with the families taking part and arranging their hotel and travel needs.

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 planned for 2018 he continues to be a source of inspiration and exasperation to all.

 

Rachael Stevenson

Executive Director, Co-Founder, Trustee

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.

Under Rachael's leadership, the charity has won two awards, the Charity Times Award's Best New Charity 2011 and the Just Giving Award's Best New Charity 2012.

Rachael was a Finalist in the Inspiring Women's Awards 2015.

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:

e: rachael@reverserett.org.uk

t: @rebloo

Personal blog: http://www.liferettetc.com/

 

Hazel
Beiny

Wesley
Havill

Beth
Johnsson

Oliver
Perkins

Hayley-Rose
Rutherford

Rachael
Stevenson

Andy
Stevenson

Kate McMaster

Trustee

Kate lives in Glasgow with her husband Scott and their 4 ½ year old daughter, Kim, who was diagnosed with Rett Syndrome a few weeks after her second birthday.

Kate was born in Glasgow and has lived there for most of her life except for a 5 year stint working London and a 6 month working holiday in Greece. Her and Scott love living in Scotland despite the weather and enjoy the ease of getting up North.

Kate works part time in the pharmaceutical industry where she has fulfilled many different roles over the last 18 years.

Since learning of the research that had been done both here and abroad Kate, Scott, their family and friends have thrown themselves into fundraising for Rett research, raising an incredible amount of money in a short space of time.

'Kim’s diagnosis was utterly devastating and like all parents the early days were so hard. Have we come to terms with our gorgeous daughter having Rett Syndrome? No we haven’t and I don’t think we ever will but you learn to live with it, as life continues at pace.  The one thing that has made it easier to bear was learning of the research that had been done both here and abroad.  Having worked in the pharma industry for so long I am not naive enough to think that positive research is easy to convert to therapy but I truly believe that this will happen for Rett Syndrome and enable our girls (and boys) to be more able. Even in the short time since Kim was diagnosed the progress has been incredible.'

'I am truly honored to join the board of such an inspirational and hardworking charity and only hope I can support the work that is continuing for our beautiful girls.'      

Catherine McKinney

Trustee

Catherine lives in North Berwick on the south-east coast of Scotland, with her husband, Ross, and four young children. Her second-eldest, Eliza, was diagnosed with Rett Syndrome just days after her 3rd birthday, following 18 months of tests

After meeting other families and getting to know Reverse Rett, Catherine and Ross attended the 2014 London Gala Dinner and decided to focus their efforts on fundraising for the charity and a better future for Eliza.

A 10k run, 13k 'kilomathon' and half marathon followed, with many friends and family also taking part in both these and their own fundraising events. Catherine set up 'Hope for Eliza' as a means of raising money and received coverage in local and national press.

With great support from her local community and some very good friends, Catherine helped to organise the 'Hope for Eliza Ball' in 2015, which raised over £30,000 for Reverse Rett.

Since 2016, a 5k run at one of Catherine and Eliza’s favourite places, Archerfield Walled Garden, has become an annual event, raising over £25,000 in its first two years.

Before settling in East Lothian, Catherine travelled extensively, spending several months in South America and living and working in Spain, Australia and New Zealand. Her degree in American History & Literature included a year studying in Miami, where the subjects ranged from the civil rights movement to scuba diving.

After returning to Edinburgh, Catherine enjoyed working in editing and graphic design for two small publishers, and continues to be an avid reader and Edinburgh Book Festival groupie. She is also interested in natural health and is a team leader for Neal’s Yard Remedies Organic skincare. Her other interests include yoga, interior design and - when the children are in the right mood - family walks in the beautiful East Lothian countryside.
 

Ortensia Martinotti

Trustee

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

Chair of Trustees

In 2010, John’s daughter, Sarah and his son-in- law Marc, had a baby girl called Amber. Amber was diagnosed with Rett Syndrome in 2012 when she was 2 years old.

His wife, Maureen, and John immediately learnt all they could about Rett Syndromeand discovered the hope that exists for everyone who has Rett Syndrome through the reversal experiment and the ongoing research program.

John studied Biological sciences at Liverpool University and therefore has a deep belief in the power of science to understand problems and to find solutions. The exciting progress being made in the research program we help fund, to find treatments or a cure for Rett, reinforces my belief that with enough investment we will be able to improve significantly the lives of all people with Rett Syndrome. This is why it is so important to maintain our fundraising activities.

John is now retired, after having worked all his life for Unilever and with many famous brands like Persil, Comfort, Domestos, Dove, Ponds, Sure, Lynx, Signal, Birds Eye Frozen Foods, Magnum and Cornetto. He worked in many countries; South Africa, the US, the Philippines, Switzerland, Belgium and the UK, before finally running Unilever's European Home and Personal Care Business Group.

In his retirement, Johns interests are travel, photography, sculpture and family and now, of course, Reverse Rett. John and Maureen have three children, settled with families, and Amber is one of their six grandchildren.

"After a time in 2013 as a member of the Professional Advisory Board I became a Trustee and then Chair of Trustees in 2014. I hope that I bring to my role some organisational experience that will help us strengthen the Reverse Rett organisation so it can continue to pursue its mission with even more success."

 

 

 

Monica Coenraads

Trustee, Co-Founder

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 Simmonds

Vice-Chair

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.

Monica
Coenraads

Ortensia
Martinotti

Catherine
McKinney

Kate
McMaster

John
Sharpe

Helen
Simmonds