Annual Review 2016 - 2017
Providing inf ormat ion and pract ical guidance t o support and empower individual s and f amil ies l iving wit h Fragil e X Syndrome www.f ragil ex.org.uk Charity Registration Number: 1127861
Company Registration Number: 6724061
Scot t ish Charit y: SC047732
About Us We exist to support and empower individuals and families with Fragile X: -
-
Due to society's attitudes, challenges with accessing services and features caused by the condition, people living with Fragile X and their families face wide-ranging challenges. Families regularly tell us that generic supports and services did not understand their needs adequately, or that they felt lost in broader organisations relating to autism or learning disability. A lack of awareness also means that Fragile X is being overlooked or misunderstood as a diagnosis. A lack of understanding of the condition can contribute to feelings of loneliness and isolation.
For the past 26 years, the Fragile X Society has been the only specialised charity in the UK dedicated to individuals and families living with Fragile X. We are there for people from the point of diagnosis and through their lives. Our charity led by people with a personal link to Fragile X on our board and is supported by a small, dedicated team in our office. Together , we work together towards our charity's aims, for the benefit of the Fragile X community.
Aims of t he Fragil e X Societ y -
To provide information and practical guidance to support and empower individuals and families living with Fragile X Syndrome and Fragile X-associated conditions
-
To educate and inform the public and professionals about Fragile X in order to raise awareness and understanding of the syndrome and improve support for all individuals affected by Fragile X
-
To encourage research into all aspects of Fragile X through the participation of our family members in Fragile X studies and to publicise the results
-
To raise sufficient funds to enable The Fragile X Society to achieve it's aims, and to meet the growing needs of the Fragile X Community.
What is Fragil e X? Fr agile X Syn dr om e is t h e m ost com m on cau se of in h er it ed lear n in g disabilit y -
-
Approximately 15,000 people in the UK are living with Fragile X Syndrome. Fragile X Syndrome is associated with autistic-like behaviour and is the underlying cause of up to 1 in 20 cases of autism. Common features of the condition include: difficulties with learning; social anxiety; difficulty with attention; challenges with communication; and health-related issues. Diagnosis requires a blood test and is available via the NHS. Correct diagnosis can mean improved support and understanding for whole families.
Fr agile X is a Fam ily of Con dit ion s The effects of Fragile X are wider than Fragile X Syndrome, and may affect multiple members of families in different ways. -
-
According to prevalence statistics 1 in 250 women and 1 in 800 men are carriers, who carry a smaller change to their Fragile X gene, meaning that they may pass Fragile X Syndrome to future generations. In later life, carriers may experience Fragile X Tremor Associated Axtaxia (FXTAS): a late onset neurodegenerative condition which causes problems with memory, balance and tremors. In addition, women may experience Fragile X Associated Premature Ovarian Insufficiency (FXPOI), which is associated with early menopausal-like symptoms and may cause infertility. Being a Fragile X Carrier is also associated with other physical and mental health challenges.
Summary of Our In f or m at ion an d Gu idan ce Support ing more individual s and f amil ies t han ever bef ore. -
-
-
-
Our t ot al membership current l y st ands at 2,060, comprised of individuals families with Fragile X based in the UK and abroad, and our associate members (professionals with an interest in Fragile X). Our specialist support workers responded to 1,070 enquiries via our nat ional hel pl ine service, providing in-depth, emotional, and practical support to those affected by Fragile X syndrome, undiagnosed families, and professionals. This is a 25% increase in enquiries this year, demonstrating an ever-increasing demand for our services. We held 2 Fragil e X conf erences, inviting key speakers to present the latest research and information on the condition to families, who also had the opportunity to network and share experiences. We launched our Easy Read Guide: "I Have Fragile X Syndrome"
When I rang the helpline, I felt such a sense of relief - they actually understood. Our professionals hadn't heard of Fragile X and we had felt so alone. Edu cat e an d In f or m Teaching prof essional s and t he wider publ ic about Fragil e X. -
We now have over 180 Fragil e X-specif ic inf ormat ion resources available for free, as well as our DVD and book. Through our eLearning programme we trained 113 prof essional s in collaboration with Cornerstone. Our work in Scotland continues to develop substantially thanks to specific funding, enabling us to reach 382 prof essional s for training through various initiatives. Our Fragile X Awareness Day campaign, FragileXpedition, was an enormous successcollectively our supporters beat our target of collectively travelling the equivalent of the outline of the UK (8,026 miles!) and raised an astonishing ÂŁ13,000! There was a great response online, through events and with the local media to raise much-needed awareness of the condition.
We extend special thanks to the Trusts and Foundations who have supported us this year. In particular: The Robertson Trust; The Chapman Charitable Trust; Jeans for Genes; Childwick Trust; Hugh Fraser Foundation.
Year - 2016-17 Im pr ovin g Su ppor t & Un der st an din g Support ing and input t ing int o research. -
-
80% of our members have agreed to be contacted about taking part in research This year, we supported 12 research projects, taking the total to over 80. This involved review and input into the project and advertising for recruitment of participants. We have worked with researchers to establish projects on under-researched areas of Fragile X, including adulthood.
This image shows the first meeting of UK Fragile X researchers at our Fragile X Syndrome Research Workshop
Fin an ces Overview of income and expendit ure f or t he year 1st Mar'16- 29t h Feb '17 Summary 2016/ 2017
Where each £ came f rom... Fundraising 22p
Tot al income: £276,430
Grants 13p Conferences 1p
Where each £ went ... Support + Information Services 56p
Fundraising 8p Conferences 9p
Direct Charit abl e Expendit ure: £140,176
Sales 1p Newsletters 5p
Tot al expendit ure: £201,081 Bal ances of f unds at 29t h February 2017: £184,330
Donations 63p
Office Costs, Communications & Support Staff 20p
Governance 2p
We would like to say a specific, and heartfelt thank you to the donor whose gift of £100,000 was given to the charity in a time of great need this year. The work outlined in this review simply would not have been possible without you. As a small but national charity, funding remains a great challenge and an aim of our up-coming year will be to focus on sustainability and growth of our fundraising, in order to maintain and expand our services for the benefit of the Fragile X community. In our opinion, the financial summary is consistent with the Fragile X Society's annual accounts for the year ended 29th February 2016, on which we have issued an unqualified audit report. - Simpson Wreford & Partners, Chartered Accountants and Registered Auditors, Croydon: 25th August 2016. Please contact The Fragile X Society or Simpson Wreford & Partners for a copy of full audited accounts.
Looking t o t he Fut ure Our vision is a world where people living with Fragile X are: -
Valued, included and have their individual needs met - and that Fragile X is recognised and understood by professionals and the public. Not alone - that they have access to an active community of people who understand. Empowered - through evidence-based knowledge about Fragile X.
In order to work towards this aspiration via our charity's aims, we have some exciting plans for the up-coming year: -
-
Focus on raising awareness, including specifically focussing upon the pathways to diagnosis and support at diagnosis. To create and launch a new series of educational films about Fragile X To help to strengthen the research community in the UK through building a network of researchers , and to use this network to support the generation of research projects aligned with the needs of our community. To continue our ongoing work towards our aims. To focus upon further developing our fundraising strategy across a broad range of sources to ensure that we can meet the growing needs for our services.
The support and guidance that we have received as a family has been invaluable. I don't know what we would have done without them. How You Can Help Although national, the Fragile X Society is a relatively small charity which receives no Government funding and relies entirely on voluntary income. With the growing demand for our services and support, we know we need to raise both our profile and income potential. Grant making trusts and foundations play a big part in our future growth, along with community fundraising and challenge events and this may be where you could help us. We need to reach deeper into local communities and encourage and inspire local organisations, community groups and schools, to consider supporting the Fragile X Society as their Charity partner of the year. We also need folk to come on board and take on our extreme challenge events. So please remember our need and let us know of any fundraising opportunities in your local community; annual events, local grant making trusts or local school or corporate connections that might ease our path and enable us the chance to inspire and encourage fundraising support and you could be helping us make the world of difference.
info@fragilex.org.uk | 01371875100 | Rood End House, 6 Stortford Road, Great Dunmow, Essex, CM6 1DA