Launching the Donna Ida Fund for Jeans for Genes

Thanks to everyone for all your help and support in 2011, we managed to raise over £50,000 for Jeans for Genes! This is an incredible amount so well done and thank you to everyone for your hard work, perseverance and of course running skills!

The Donna Ida Fund has now been set up by Jeans for Genes. This fund has been created by Jeans for Genes in recognition of the hugely successful fundraising from 2011. These are the very worthwhile projects which we are supporting thanks to your generosity and the money you raised:

PCD Family Support Group: PCD (Primary Ciliary Dyskinesia) is a condition in which the cilia (microscopic hairs involved in the movement of bodily secretions) don’t function properly. It can affect lungs, nose, sinuses, ears and fertility, making sufferers prone to recurrent infections and even lung damage. The Donna Ida Fund has been used on an annual PCD family support day to give families the chance to meet others dealing with the same condition, listen to speakers and talk to experts.

Headlines Craniofacial Support Group: Craniosysnostosis is a condition where the skull sutures (seams) fuse prematurely, leading to problems such as severe disfigurement and difficulties with learning, vision and breathing. The combination of rarity and disfigurement often makes sufferers feel extremely isolated, particularly when they are teenagers. The Donna Ida Fund will be used by the Headlines support group to make an educational DVD, featuring parents, children and young people, to offer new members information, reassurance and hope for the future.

Caring Matters Now: Congenital Melanocytic Naevi (CMN) is a disfiguring skin disorder that causes pigmented, hairy moles covering up to 80 per cent of the body, making sufferers self-conscious because of the attention they can draw. Support group Caring Matters Now (CMN) will use The Donna Ida Fund will pay for the charity’s first family activity weekend, including opportunities for the children to swim without any of the stress and anxiety associated with using public pools.

Myasthenia Gravis Association: Myasthenia Gravis (MG) is an autoimmune disease which leads to weakness of voluntary muscles such as those controlling breathing, talking, chewing, eye movement and even facial expressions. It is thought that around 200 UK children have Congenital Myasthenic Syndrome (CMS). Subtle signs and variations in children’s muscle strength may signal the onset of a CMS crisis. MyasthenicKids, the national children’s branch of The Myasthenia Gravis Association (MGA), will use The Donna Ida Fund to conduct a research project with the aim of developing a usable clinical assessment tool for monitoring levels of weakness in myasthenic children.

Restricted Growth Association: It is estimated that restricted growth affects around 1 in 10,000 births per year and that around 6,000 UK people have a restricted growth condition. It is not unusual for youngsters affected by restricted growth to be bullied and this can damage self-esteem. The Donna Ida Fund will pay for an activity weekend to boost the confidence of young members and encourage them to share their experiences with others.

Herefordshire Learning Disability Trust: Herefordshire Learning Disability Trust is an umbrella organisation representing youngsters with genetic conditions. It is based at a special school in Hereford and currently has 17 out of 80 pupils with genetic disorders. The Donna Ida Fund will pay for 17 places at a summer holiday club to benefit children with genetic conditions plus a further 13 places for able-bodied children. The club will offer the opportunity for all the youngsters to do sports, crafts and team-building, as well as providing respite for parents.

Deafblind Scotland: More than 80 members of Deafblind Scotland have Usher Syndrome, a genetic condition often diagnosed in the early teens or twenties which leads to both hearing and vision loss. This can be devastating and invariably leaves youngsters feeling uncertain about their future. The Donna Ida Fund will pay for a project worker for the Usher Outreach Project. This will help children and young people with Usher Syndrome by providing peer mentors to give them support and inspiration for the challenges ahead.

Cardiac Risk in the Young (CRY): Every week, 12 young people in the UK die suddenly and unexpectedly as a result of undiagnosed heart conditions (Sudden Death Syndrome), the majority caused by hereditary conditions such as Long QT Syndrome. Cardiac Risk in the Young (CRY) is the only organisation that focuses on Sudden Death Syndrome in young people. They will The Donna Ida Fund to run Regional Surgery Supporters Network meetings, offering support to youngsters following diagnosis of a cardiac condition.

Ataxia UK: Ataxia is a life-limiting neurological condition which gradually makes sufferers lose control of bodily functions including balance, speech and co-ordination. There is no cure and eventually it leads to entire dependence on others. It is estimated that 5,000 children in the UK have the condition. National charity Ataxia UK will use The Donna Ida Fund to pay for its Young Person’s Information Project - the production of a booklet and film for teenagers, and a booklet for parents and carers of children with ataxia.

For the full list and further information please visit the Jeans for Genes website
Please keep checking back for more updates on Jeans for Genes 2012.

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