An Update from the new Fanconi Hope Chairman, Bob Dalgleish

It’s hard to believe but it’s now 10 years since Fanconi Hope was formed. At our Annual General Meeting last month I formally took over as Chairman, so I thought it was timely to introduce myself, highlight some of the achievements over the last 10 years and update you on developments within the charity.

For those of you who don’t know me, I am Bob Dalgleish, I live in Portsmouth and to date I have had the role of Secretary since helping to set up the charity in 2008. My wife Jeannie has actively supported FA family activities since the start and our daughter Louise (with FA) has been indispensable on the social media front. Balancing family life, charity activities and my daytime job in electronics research has always been challenging, but since taking early retirement last year I now have a bit more time (although never enough!) to devote to charity matters. Earlier this year I took time out from my usual role of helping other people fundraise by raising money directly through a sponsored Kilimanjaro Climb. Although mountaineering has been a hobby of mine throughout my life, I was pleased to make the ascent unscathed given my advanced years now! I was equally delighted with the generosity shown by friends and family which resulted in more than £3,500 being raised for Fanconi Hope. I am going to Camp Sunshine next week with my daughter for the first time, and am very much looking forwards to meeting many of the families and FARF staff who I have only ever met online.

Over our first ten years we have:-

  • Published the first UK and Ireland FA standards of Care.
  • Raised over £275,000 for Research and Family Support.
  • Sponsored research projects to the value of £164,000.
  • Established an International FA Gene Therapy Working Group in partnership with the Fanconi Anaemia Research Fund, now in its 9th year and with FA Gene Therapy trials now running in 3 countries.
  • Established the first UK and Ireland FA Patient Registry and a long term study into the health of FA patients.
  • Identified over 85 FA patients in the UK and Ireland, 24 of whom, encouragingly, are adults
  • Held 3 Family Days/Conferences, with the most recent, in Oct 2017 attended by over 100 people.
  • Developed links with a number of Family Support Groups worldwide.
  • Created a website and social media presence, with over 1000 likes on Facebook.
  • Raised awareness through exhibiting at numerous medical conferences and acting as storyline consultants for ITV’s Emmerdale Soap Opera which drew up to 6 million viewers a week.

Today:-

  • We are fortunate in having a set of Trustees with a broad range of skills and who are all committed to improving the care of people living with FA. In addition to our long standing Trustees, Dr Stefan Meyer in Manchester, and Mrs Louise Parry, an FA Parent in near Manchester, we now also have on board Dr Josu de la Fuente and Dr Marc Tischkowitz, consultants in London and Cambridge respectively and Dr Nigel J Jones, a biology lecturer in Liverpool specialising in FA.
  • We are also incredibly lucky to have Beth Lee now working with us and those of you that know her will know how dedicated she is to helping families with FA.
  • Our Patron, the Duchess of Devonshire, remains as supportive as ever, and has been instrumental in helping us raise some significant amounts of money, not to mention an audience with the Queen and the Duke of Edinburgh in 2016 to hear about the charity and our work from our Treasurer, Louise Parry.
  • Our outgoing chairman, Thomas Carroll, is both an FA parent and a clinician working within the NHS, and he used his knowledge of the workings of the NHS, coupled with great energy and enthusiasm, to help us realise many of the ambitions of the charity. I am indebted to him personally for his inspiration and encouragement, without which the Fanconi Hope charity would never have got off the ground. I would also like to thank our other outgoing Trustees, Dr Mary Morgan, and Mr Alan Gillespie for their support to the charity from the start.
  • We have a record number of fundraising activities running currently on JustGiving and VirginMoneyGiving, with more money raised in May than in most of last year.

Looking to the future, we will be:-

  • Unveiling our updated website shortly, which will be secure, mobile friendly and easier to navigate.
  • Looking to increase representation in the charity further across Scotland, Ireland (North and South) and Wales.
  • Focussing on persuading as many FA patients as possible to join the Registry project.
  • Extending our International collaboration activities, in particular with FARF, with meetings already in place for July and Sep 2018.
  • Launching a major fundraising appeal for £100,000 to understand the effects at a biological level of emerging Proton Beam Therapy technology, since this has the potential to substantially improve the treatment of the ‘difficult’ cancers found in FA patients.
  • Updating the FA Standards of Care
  • Holding major Family Conferences every two years, with smaller regional events more regularly, to give families the chance to meet up and share experiences.

When we started the charity, the Duchess of Devonshire believed that we as a small charity could have a big impact on many lives. I believe that we have already shown that this is possible but as the parent of a child with FA and as Chairman of Fanconi Hope I will not rest whilst there is the opportunity for improved treatment for all and ultimately, a cure.

Best wishes to you all.

Bob

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