From the 13th to the 19th of September, we will be supporting Jeans for Genes Week. The campaign takes place once a year to raise awareness of the challenges those living with a genetic disorder face and help raise funds to create projects that support them.
Who are Jeans for Genes?
Jeans for Genes are a charity that raises money to fund research to find treatments for genetic disorders. In 1991, the CGD Society was registered as a charity by Paul Numan, who wanted to find a cure for his son, who had Chronic Granulomatous Disease (CGD). Jeans for Genes began in 1992 when the CGD Society contacted 20,000 schools in the UK to educate them about genetic disorders and asked to work together to raise money to support the charity’s research.
What is a genetic disorder?
A genetic disorder is a disease that can occur by a change or mutation in a person’s DNA sequence. There are currently over 6000 known genetic disorders. You can view a list of the most common disorders on the National Human Genome Research Institute website.
The importance of Jeans for Genes Week
Jeans for Genes Week shines a light on organisations that work to improve the lives of those affected and celebrate the achievements of people living with a genetic disorder. Throughout the week, the charity shares stories and achievements of those living with a genetic disorder and what people can do to support them.
Why is Jeans for Genes Week important to us?
Jeans for Genes Week aims to bring people together to share the issues that matter to them, improve the lives of those affected and celebrate the achievements of people living with a genetic disorder. To support the campaign, we are sharing a story about one of our client’s, William, who lives with a genetic disorder called Duchenne Muscular Dystrophy. In our care, William has overcome many obstacles and is living a fulfilled and happy life.
What is Duchenne Muscular Dystrophy?
Duchenne Muscular Dystrophy is a genetic disorder that affects the muscles and leads to muscle wasting over time. The disorder causes progressive weakness and loss of skeletal and heart muscle. Due to William’s condition, he is tracheostomy and ventilator dependent. To move around his home and local community, William requires a wheelchair and around the clock care from our dedicated team.
How we support him
Due to William’s condition and young age, we wanted to give him the best possible care and support to enable him to live the life he wants. With our core team of six nurses and four support workers, we can provide bespoke care, work closely with his family and allow William to live a fulfilled life. We hold regular team meetings with William's carers, clinical lead and case manager to ensure everyone is up to date on his progress. You can learn more about William’s story on our website.
William’s life today
We have received positive feedback from the Clinical Commissioning Groups (CCG). They are very impressed with the quality of William’s care and the support we provide to him. William is now the most clinically stable he has been in years. He has continued to put on weight and had no hospitals admissions. He is now able to attend events at his local park and showcase his musical talent. William also has his own record studio in his room, which the nurses and support workers know how to use. We are proud of how far William has come in our care and how our fantastic team of healthcare professionals have continued to provide him with the best clinical care and support.
How can you support Jeans for Genes Week?
The Jeans for Genes charity have created a social media toolkit and a fundraising toolkit, which you can find on their website. You can also wear jeans for a day and donate to the charity to support their goal of ‘changing lives’.
At Thornbury Community Services, we are always supporting events and campaigns throughout the year. To keep up to date with what we’re up to, follow our LinkedIn and Facebook pages.
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