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Small grants to make a big difference to people with rare illnesses thanks to National Lottery cash

A project helping young people that live with rare conditions that cause premature ageing is among those in Wales supported by the latest round of grants from the Big Lottery Fund.

Amy and Friends in Denbighshire will use £5,000 to pilot their weekly siblings club, for children who either have or are affected by life limiting illnesses, in Rhyl. They are one of 46 community projects across Wales receiving a share of £190,664 under the latest round of the Big Lottery Fund’s Awards for All programme. (See a full list of project descriptions).

Welcoming the grant, Georgina Johnston of the project said: “The Amy and Friends 'My Time 2B Me' Club in Rhyl were delighted to receive funding from Big Lottery Fund Wales which enabled us to actually get the club up and running. They were so supportive throughout the process, they were fantastic!

“Amy and Friends is a charity which was set up to support families where a child (or children) have been diagnosed with Cockayne Syndrome, a rare genetic disorder which causes premature ageing. 'My Time 2B Me' was formed to support children from 7-16 years of age who have a sibling or parent with a life limiting illness/condition or disability/issues that impact greatly on families life.

“Through this funding we can provide a safe environment where children can have time out from the pressures of family life to just be themselves and have fun, meet new friends, learn new skills and be supported, listened to, and understood.“

Valleys Fibromyaligia Support Group in Caerphilly will use £2,008 to develop promotional items for their group, which supports anyone who suffers from, or cares for someone with, Fibromyalgia, a debilitating chronic pain condition.

Welcoming the grant, Douglas McMahon of the project said: “I wish to thank Big Lottery Fund for funding Valleys Fibromyalgia Support Group with a grant. This funding will help us to get information out to all the people who suffer from Fibromyalgia, and to support the members and future members at our meetings.

“Fibromyalgia is debilitating chronic pain condition which causes widespread pain, chronic fatigue, and sleep deprivation. So thank you Big Lottery Fund for supporting us and for making the process so easy.”

Also in Denbighshire, Uwchaled First Responders receive £4,590 to install a digital radio mast which will increase connectivity between the members so they can communicate with each other during emergencies.

Bethan Trenchard of the project, said: “The funding request is to purchase and fit a digital antenna to power our radios, we are a very rural community with poor mobile phone signal. The radios allow us to communicate with the team regarding patients’ conditions as well as their precise location as they may not be in a building but a field or forestry this info can then be relayed to ambulance crews. There is a safety element here also as they have panic buttons.

“The mast will allow better coverage making us efficient, effective and safer. A professional approach helps our patients and their families to have confidence reducing their stress and anxiety.”

Elsewhere across Wales, in Vale of Glamorgan, Deafblind UK receive £4,788 to recruit and train five Deafblind Digital Support Ambassadors across Wales to be matched with other deafblind people eager to explore the digital world. In Ceredigion, Pembrokeshire People First will use £4,570 to run a weekly self-advocacy groups for vulnerable adults, including those with learning disabilities and mental health issues, in Cardigan.

In Merthyr Tydfil, Treharris Boxing, Fitness & Wellbeing Association will use £5,000 to set-up a new community gym that will provide a space for inactive men and women to pursue their fitness goals in a fun and supportive environment. In Powys, Crickhowell Volunteer Bureau use £5,000 to develop on their previous 'Going for Gold' project, supporting disadvantaged young people who are struggling to find opportunities due to financial, physical or social barriers to undertake their award.

Gareth Williams, Awards for All Programme Manager for the Big Lottery Fund in Wales, said: “Awards for All is having a positive impact throughout Wales.

“Money is helping to establish groups, societies and clubs, promoting learning, increasing volunteering opportunities and helping to build stronger communities.”

Available in English and Welsh, application forms are available to download to different website or by phone on 0345 4 10 20 30.

Further Information:

Alex Davies - Big Lottery Fund Press Office: 029 2067 8236
Public Enquiries Line: 0845 4 10 20 30                          
Textphone: 0845 6021 659
Full details of the Big Lottery Fund programmes and grant awards are available at:
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Notes to Editors:

  • The Big Lottery Fund supports the aspirations of people who want to make life better for their communities across the UK. We are responsible for giving out 40% of the money raised by the National Lottery and invest over £650 million a year in projects big and small in health, education, environment and charitable purposes.
  • Since June 2004 we have awarded over £6.5billion to projects that make a difference to people and communities in need, from early years intervention to commemorative travel funding for World War Two veterans.
  • Since the National Lottery began in 1994, £34 billion has been raised and more than 450,000 grants awarded.


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