About FAB

FAB (Fight Against Blindness) was founded and registered with the Charity Commission in 2008.

 

The trustees have supported charity work and fundraising for the blind for over twenty years.  All trustees are unpaid volunteers.

 

The charity funds paediatric psychological support and gene testing for children, families and adults with RP. This work is not carried out by any other charity.   It funds work into therapies to cure for RP.  The charity disseminates the useful results of its work for the benefit of the public.

 

Retinitis Pigmentosa (RP) is the largest untreatable cause of hereditary blindness in children and young adults in the UK.  Presently there is no treatment that can cure it or stop its progress .  A key objective of the charity is to help children affected by RP and their families cope with the difficulties and choices they have to make as the disease progresses often to complete loss of sight.  This sight loss is devastating to children and young adults as it is very hard for them to cope with the prospect of progressive (and often aggressive) visual deterioration, especially so for the older children who often cannot come to terms with being "different" from their peers.  It is children who most benefit from support, therapy, treatment and cure of this awful disease.

 

RP severely impacts the life choices that children and families have to make.  This includes education, social exclusion problems, choice of career, place of residence and reproductive choices.  Parents may not know the type of RP they or their children have, how aggressive it might be, how it involves the wider family, or if it has been passed on to their grandchildren.  This is why gene testing for RP is so important because it can identify the faulty gene, and consequently the RP type, its severity and hereditary pattern.  Gene testing also provides research scientists the materials for their work and the vital direct link to people who will be cured as therapies become available.

 

Statement from Clive Fisher – Chair of the Charity

“As we all appreciate, losing one’s eyesight is an extremely difficult and debilitating experience.  Most of us know somebody with visual impairment and so understand how hard it is to cope.  In particular, we know how those affected can be robbed of their independence, livelihood and career choice if they are of working age.  Sight loss is particularly devastating to children and young adults as it is very hard for them to cope with visual deterioration.  Retinitis Pigmentosa, or RP for short, is a hereditary eye disease where in many cases, people become blind over a number of years, starting in childhood.  It can be aggressive and is the largest cause of untreatable hereditary blindness in children, young adults and those of working age.  There is no cure at this time.

 

It is very hard for families to be given a diagnosis that affects children and have to cope with the prospect of progressive visual deterioration, especially so for the older children who often cannot come to terms with being "different" from their peers.  Here, the charity supports young children with early onset retinal dystrophy and older children with a new diagnosis of RP by funding their psychological support  and gene testing.  The charity also helps fund research to find a cure.”