The Phoebe Research Fund was founded in February 2015 by myself, Zoe Crowson, to facilitate funding towards a possible cure for my daughter Phoebe and fellow Recessive Dystrophic Epidermolysis Bullosa Sufferers like her. There are only 5000 EB sufferers in the UK and only 20% have the type of EB Phoebe suffers from. In effect Phoebe has a rare form of a rare disease and in actual fact it took St Thomas’s Hospital 3 months to determine the type, a situation that would normally take just 24 hrs.

The idea of The Phoebe Research Fund is that because it’s so rare, finding a cure is in fact harder as there is currently no government funding. Furthermore, any support from other sources tends to go on other areas which will help sufferers of a different type of EB which is predominantly Simplex. All funds raised by The Phoebe Research Fund will go into research for Recessive Dystrophic EB as this the life limiting form and in fact the worst type of EB.

Over the years since having Phoebe I’ve met many parents that have a whole host of challenges to face. It’s not just the fact they have EB it’s the exclusion from society that not only the child but parent has to deal with. Phoebe is getting to the age where she knows that she can’t attend most parties and that I have to continually have to say no, slow down and be careful. Life becomes a constant risk assessment. Added to this is the constant attention that her blisters and wound care require, throughout the day and night as they are not self limiting. I’m sure you will agree that this is not what anyone would wish for their child.

It has to be said that everyone of these sufferers, and Phoebe is by no means the worst, are incredibly brave in the way they deal with their disability. They possess a pain threshold that the average human being doesn’t seem to have or perhaps they are simply so used to being in constant pain that their pain management is much better than ours.

My inspiration is Phoebe, a brave young lady who does her best to fit in with her friends. She never moans about anything and always shows care and empathy to others. My wish is for Phoebe and other sufferers like her to have the childhood that they deserve where they don’t have to worry about eating going to the toilet, being trodden on, bumped into or falling over. There is also the surgery which Phoebe will be subject to for her whole life to stretch her throat as it narrows due to blistering.

By doing the charity my focus remains positive about finding that all important cure which I wish for everyday. I simply couldn’t possibly do this without the support of family, friends, the media and businesses like The POSH.

Thank you for choosing to help The Phoebe Research Fund (a child’s fight for a future)

Meet The Team

Zoe Crowson

Zoe Crowson

Founder & Trustee

Mother of Phoebe who is a sufferer of (RDEB), I founded the charity in Feb 2015. Having worked mainly in publishing as a commercial editor I wanted to use the skills accrued through previous experience and apply it to making life better not just for Phoebe but other EB sufferers.

Helen Skidmore

Helen Skidmore

Trustee

Helen is the manager of a jewellery design studio as well as one half of H & R designs, a stationary design company. With over 20 years commercial experience in the gift and jewellery industry, she has a love of design and a ‘right brain’ philosophy.

    Mark Thomas

    Mark Thomas

    Trustee

    An IT Consultant and director of his own business for 20 years whilst working in investment banking in London and Europe. He is a runner, snowboarder and adventurer. Married to Laura and father to Georgie and Henry.

      Ross Phillips

      Ross Phillips

      Trustee

      Ross is married to fellow trustee Helen and is one half of H&R design a stationary design company based in Stamford and Peterborough. An outright perfectionist with a love for design and fast cars.

        Green Stones

        Green Stones

        Peterborough Accountants With an Unexpected Difference. Oh Yes. We like to sum up our difference in three words: that we will Inspire, Challenge and Support you to be the best you want to be – driven by a desire to cheer you on to what you want to achieve. So now you’re looking for an accountant in Peterborough with a difference Visit our website

        Adrian Dewey

        Adrian Dewey

        Adrian is a freelance photographer, illustrator and designer. He has contributed work to publications from The Sun to Vogue Italia and everything in between. He is also the author of How to Illustrate and Design Concept Cars. When he is not being creative, he can be found asleep.

        DowSocial

        DowSocial

        Peterborough Digital marketing consultancy providing social media and content marketing strategy, training and outsourced management for businesses across the UK and beyond. Supports and trains the Phoebe Research team how to get the most out of social media to spread RDEB awareness.

        PPS Print

        PPS Print

        PPS have been supporting local business and charities in Peterborough for over 40 years, helping them to design and print their marketing materials such as brochures, flyers, sponsor forms and large fundraising cheques. Also offering a large range of promotional gifts and fundraising calendars we help to raise the profile of charities such as Phoebe’s Research to ensure they can maximise their fundraising efforts through quality printed and branded material.

        H&R Design

        H&R Design

        Unique, bespoke designs created with a personal touch. H&R Design was created to offer easy accessible design for every occasion. With the benefit of two creatives, Helen and Ross H&R Design offer both personal and business design solutions no matter how small or large the brief. They have broken down the barriers of jargon, pricing and unapproachability by creating a people based company with a personal touch, working closely with their clients, translating their vision into beautiful designs. Specialising in typographic prints, occasion stationery, business rebranding, brand development and anything in between, let their passion for design showcase your vision. Designs come and go. Your design is for ever…