Grant programme charity spotlight - Jeans for Genes

Grant programme charity spotlight

When you take part in Jeans for Genes, either in your school or work place, you help Jeans for Genes provide vital funding to frontline genetic condition charities.  Without adequate funding they cannot survive, let alone thrive, and individuals and families living with genetic conditions will miss out on the services, programmes, and advocacy they desperately need.

Our project grants provide funding to help tackle a wide range of complex issues affecting the genetic condition community such as delayed diagnosis, lack of treatment options, bereavement, mental health issues, isolation, social stigma and barriers to education and work.

Our core funding grants and capacity building support increase the ability of very small genetic condition charities to sustain, grow and provide their vital services and advocacy in the long term.

There are over 6,000 genetic conditions that affect the lives of 10% of people across the UK.

Some genetic conditions are apparent at birth whilst others are diagnosed at different stages throughout childhood, adolescence and sometimes into adulthood.

Affected individuals and families face complex health and socio-economic barriers in their lives, with genetic conditions being the biggest killer of children under 14.

Over the last thirty years, Jeans for Genes has provided £45 million in funding to the genetic condition community thanks to Jeans for Genes fundraisers.  In the last three years alone, 62 grants have been made to charities supporting approximately 18,662 individuals and families living with a genetic condition in the UK.

Learn more about a small selection of the vital genetic condition charities who have received support via the Jeans for Genes grant programme in 2022/23:

Prader Willi Support Association:

Prader-Willi syndrome is a complex genetic condition that affects many parts of the body. Most commonly, children have weak muscle tone, delayed physical and emotional development and a constant and overwhelming feeling of hunger, which if not controlled will lead to chronic overeating and life-threatening obesity.

The Prader-Willi Syndrome Association UK works to ensure that the PWS community has access to high quality care, opportunity and support, and to promote awareness, build knowledge and further research in order to overcome the challenges of PWS.

This year, a Jeans for Genes grant is helping to fund a specialist worker to support parents of newly diagnosed children.

“Just imagine your baby and is born and immediately whisked away to Neo-natal not crying and floppy, then unable to suck due to lack of muscle tone, they are tube fed.  A month later you get the devastating diagnosis of Prader Willi Syndrome which you’ve never heard of, neither have the hospital staff so they Google it and then tell you NOT to read the harrowing out of date information the internet displays.

This Jeans for Genes grant will make a huge difference to families taking that first step to contact us for support, whether immediately after diagnosis or a little further down the line once they have had time to process the news. With this funding, we will be able to continue support new diagnosis families in a range of ways, including over the phone and, where appropriate, through face-to-face visits, as well as being able to put them in touch with other parents around the country, and liaising with health visitors and social care services in their area to ensure they are getting the support they need.”

Alex TLC:

Leukodystrophies are a group of rare genetic conditions. They affect myelin, the protective covering around nerve cells in the brain and spinal cord. The majority get worse over time and are life limiting. Leukodystrophies are often misdiagnosed and are poorly understood within the medical community. Those affected often feel disempowered and isolated, struggling to cope with their situation and unable to access the help they need

Alex, The Leukodystrophy Charity (Alex TLC) provides invaluable support and information for everyone affected by leukodystrophy and works with medical professionals to equip them with the knowledge needed to improve diagnosis and treatment outcomes for those living with the conditions.

A Jeans for Genes grant will help fund this year’s Alex TLC Community Weekend:

“Thank you Jeans for Genes for your continued support for our work supporting those affected by leukodystrophy. This grant will cover the cost of five attendees at our Community Weekend, bringing together patients and their families, the professionals caring for them and the scientists fighting to find new treatments, to learn from and support each other.”


FOP Friends Link to website:

Fibrodysplasia ossificans progressiva (FOP) is one of the world’s rarest genetic conditions, affecting just one in 2 million people. A child with FOP progressively experiences their muscles, ligaments, tendons and connective tissues turn to bone, and over time their healthy mind becomes locked inside a frozen body.

FOP Friends is the only UK charity to provide support for those living with FOP.  This year, a Jeans for Genes grant will fund a pilot project providing a bespoke mental healthcare service to individuals and families living with FOP.

“We are delighted to have received this grant from Jeans for Genes which will enable us to provide a much-needed, dedicated specialist counselling service for our patients who are living with FOP, and their families. Living with a complex condition such as FOP is an emotional rollercoaster and is fraught with challenges. FOP can flare up at any time and with no warning. The loss of mobility, independence and dignity creates significant challenges on a daily basis for both the patient and their family. Feelings of loneliness and isolation, as well as depression and anxiety are common for those living with FOP and their family caregivers.

While nothing can slow the progression of FOP, through counselling and coaching, we will be able to give our families the skills they need to deal with the heart-breaking and life-changing challenges of FOP. We are a small charity, so without the generosity of Jeans for Genes we would not be able to offer this vital support to our families. Thank you.”

Trustee, FOP Friends

Make a donation to Jeans for Genes today and our grant programme will ensure it has the greatest impact to individuals and families living with a genetic condition.