This week is #SmallCharityWeek! Small Charity Week celebrates and raises awareness of the essential work of the UK’s small charity sector who make an invaluable contribution to the lives of millions of individuals, communities and causes across the UK.
It’s the perfect opportunity for me to shout about the small but mighty genetic condition charities that I have the privilege to work with through The Jeans for Genes Grant Programme, as well as highlighting the invaluable contributions made by the very special people who run them.
There are over 6,000 genetic conditions that affect the lives of 10% of people across the UK and new conditions are being discovered on a regular basis. Despite this, the majority of genetic conditions are individually very rare and associated patient groups/charities providing support and credible information often do not exist.
Consequently, small emergent patient groups and charities, formed by those who have been personally impacted by a genetic condition, are a particular feature of the genetic condition community.
I have met many leaders and volunteers in small genetic condition charities that are also juggling family responsibilities, caring responsibilities, paid employment or navigating their own genetic condition journey, with the emotional and practical challenges that brings. They put their heart and soul into making things better for their communities with many working beyond capacity, risking burn out and leaving themselves vulnerable to vicarious trauma.
Despite these challenges and with tiny budgets and teams, these organisations have a huge impact and are the life-blood of the genetic condition community: They provide reliable information so that beneficiaries can empower themselves; host family conferences and events to create supportive peer support networks and reduce feelings of isolation; raise the profile of genetic conditions among health professionals improving clinical and diagnostic outcomes; plug gaps in NHS services, tirelessly raise money to fund important research; advocate for better treatments and care and provide services to support families overcome challenges they face with day-to-day living.
Here at Jeans for Genes, a small charity ourselves, we continue to utilise our national reach into schools, businesses and the public across the UK in order to raise as much money as we can through the Jeans for Genes event to distribute in grants, champion the vital work of small genetic condition charities and to demystify the narrative of genetic conditions for the mainstream, as we have done for the last thirty years.
We are also committed to continually challenging our thinking and adapting to what we hear through our listening work, [link to the Listening Space page] in order to improve our practices and ensure our funding programmes are as responsive as possible so that small, frontline genetic condition charities can continue to do what they do best – offering a trusted lifeline to their communities.
This #SmallCharityWeek I invite you to visit our Funding in Action page to find out more about the some of the small but mighty genetic condition charities the Jeans for Genes Grant Programme has had the privilege to fund this year thanks to Jeans for Genes fundraisers. I would also urge you to follow the charities on LinkedIn if you would like to hear more about their work and ways you might be able to help.
Danielle Singleton
Head of Community and Grants at Jeans for Genes