Subscribe Now

By entering these details you are signing up to receive our newsletter.

Turning the tide for rare disease

Jeans for Genes: raising awareness and funds to help people living with life-altering genetic conditions

Jeans for Genes Campaign is an annual, national fundraising event in the UK for children, adults and families affected by genetic conditions. The charity’s new CEO, Lynn Mumford, talks us through how Jeans for Genes was founded, how the campaign successfully raises money each year to provide charity grants and her vision for the future of Jeans for Genes.

A fresh approach at Jeans for Genes

Lynn joined Jeans for Genes as their new CEO in February 2022 after spending 20 years working with social justice charities and leading the development of a movement for systemic change toward person-led and strength-based approaches with Mayday Trust.

“I was attracted to Jeans for Genes as it’s a wonderful campaign with such a long and impactful history and such great scope for new opportunities to work more closely with the genetic conditions community.”

Where Jeans for Genes started

The history of Jeans for Genes dates back three decades, starting in 1991 with a small dress-down day at a school in Dorset, England. This was initiated by the Mills family, who wanted to raise funds for those with chronic granulomatous disorder (CGD)—the relationship with the CGD Society is still a close one today. 

The first Jeans for Genes Day planted the seed for what is now a UK-wide fundraiser for the wider genetic condition community. Over the years since, the campaign has been run by many organisations and has raised a total of £45m. 

Jeans for Genes has now registered as a charity, which opens the doors for many new opportunities, Lynn says. “We now have the ability to develop deeper relationships with the genetic conditions community and the grantee charities that we work with. We can start to explore what it means to have a year-round presence, deepen our understanding and awareness raising and develop ongoing partnerships outside of an annual event,” Lynn explains.

Fun’d raising by wearing jeans and bunny ears this September!

There has been a complete refresh of the Jeans for Genes brand, visuals and calls to action this year too. “The new, bright and exciting packs are ready for anyone wishing to take part, and there is a new theme of ‘How Do You Wear Yours?’

This year, the Jean for Genes Day has been planned so that it’s about more than just wearing jeans. The charity is aiming for an “inclusive campaign where people can add their own personal touches to make Jeans for Genes Day as individual as they are”.

Lynn explains how the day will look different this year: “We’re challenging schools, businesses, individuals and community groups to bring a new dimension to their fundraising by partnering their jeans with their favourite accessories. This could be a pair of bunny ears, a cool white T-shirt, your favourite band top or an all-out 80s get up! We’re also asking schools to take part in challenge activities, to toddle, walk, run or roll 6,000 steps or metres to reflect the circa 6,000 genetic conditions that are currently identified.”

The charity has also re-introduced the InJeanious online quiz where quizzers can play individually or create their own league, challenging each other to reach the top of the leader board. 

“We’d love everyone who takes part to get involved in our social media too so that we can share in the creativity and fundraising activities. Using hashtags #JeansforGenes and #HowDoYouWearYours will connect our fundraising community and hopefully generate a few laughs along the way!”

Future vision

Having a year-round presence as a new charity will allow Jeans for Genes to start to have a much more meaningful connection with the wider community and sector, Lynn says.

“Working in social justice has taught me the importance of deep listening to the people and communities we work alongside and making sure we’re responsive to the realities of people’s lives. Listening without an agenda can really steer our work and decision making so that we can be more informed about our grant-making and awareness raising.”

Lynn says that Jeans for Genes is renewing its commitment to listening to the small charities serving the genetic condition community as “they are the experts and the ones working on the ground”. She adds that listening carefully during the COVID-19 epidemic was a positive experience and that the organisation is now feeding what it learned into a new funding strategy and grant programme. “This will build upon the strong relationships that we already have with our funding partners by taking a more trust-based, flexible approach to funding these organisations,” she says.

“Deeper listening and meaningful collaboration with our funding partners will underpin our approach as we move forward toward our aim of being a year-round, trust-based, impactful and responsive grant-giver as well as a fun and exciting fundraiser!”

As well as having more ways to raise funds throughout the year, Lynn is keen that the charity starts to have a dialogue with its grantees, individuals, families and other charities: “I’ve already met some incredible people and look forward to getting out there more and hearing what’s really important for those we work alongside.”

A fun day with a serious agenda…

An estimated 1 in 10 families in the UK are affected by a genetic condition, and although genetic conditions are individually rare, together they are the biggest killer of children under the age of 15.1 Jeans for Genes Day, filled with fun and games, gives serious and much-needed hope for many families in need. 

Jeans for Genes Week 2022 takes place between the 19 and 25 September and encourages schools, individuals and companies of any kind to get involved in whatever way they feel comfortable. No contribution is too small, Lynn says, and each one is appreciated. She encourages people to contribute today and to sign up for their free fundraising pack

“Together, we can transform lives. The more we raise, the more we can support.”

Case studies

SMS Foundation

“Funding from Jeans for Genes means the Smith-Magenis Syndrome Foundation UK (smith-magenis.org) can continue to support families like mine who are going through a devastating and turbulent time—thank you so much for your generosity.”

Fanconi Hope

Fanconi Hope (fanconihope.org) is a volunteer-run organisation, set up by parents of children living with Fanconi Anaemia (FA). A Jeans for Genes grant funded improved IT services to ensure meetings with clinically extremely vulnerable and isolated families continued through COVID-19.

ED Society

The Ectodermal Dysplasia Society (edsociety.co.uk) is dedicated to improving the health and wellbeing of individuals whose lives are affected by ED. It received a timely Jeans for Genes grant to keep their support service going through the pandemic.

Links


Skip to content