Why Jeans for Genes Day is important
Genetic Disorders UK raises funds each year, via the Jeans for Genes Program, in order to provide support to children living with genetic disorders, via grants to charities dedicated to supporting specific genetic conditions. Funding from Jeans for Genes has funded some key parts of the Fragile X Society’s work, including support for our helpline, creation of our video series and introductory booklet. This year, we are delighted to announce that we have been awarded a grant in the 2020 program which will enable us to revamp our e-Learning module on Fragile X Syndrome. We are so grateful for their support.
However, we need your help to secure this grant!
How you can help
The success of Jeans for Genes relies on communicating with the public, through the media (including social media) the importance of diagnosis, understanding and specific support for children with genetic conditions. Therefore, in order to receive the grant, charities such as ours need to help with gathering content from our communities to help to raise awareness - both of our individual conditions and of Jeans for Genes. There are a couple of ways which you can get involved:
Record a clip
Genetic Disorders UK / Jeans for Genes is creating a short film bringing to life what it means to live with a genetic disorder, how it affects the whole family, the everyday challenges and how the money raised on Jeans for Genes Day impacts the lives of children with genetic disorders, such as Fragile X, in the UK. They want to use this footage to inspire and encourage the general public to fundraise, in order help provide more vital care and support services for the 500,000 children living with a genetic disorder in the UK.
There are instructions available here on how you can take part. Once you have recorded your clip you can send it to Danielle Singleton (Danielle.Singleton@geneticdisordersuk.org; Charity Coordinator, Genetic Disorders UK) via the details in the video brief.
Please include a photo/film permissions form for you/your child.
Get involved as a media volunteer
Alternatively, you can work with the Jeans for Genes team as a media volunteer. This involves speaking with their copywriter (Sally) about your experiences of life with Fragile X. This will then be written into a case study (which you will be able to review), before being submitted as press releases to newspapers and the media in the run up to Jeans for Genes day. If you would like to know more about this, or get involved, please contact Danielle Singleton (Danielle.Singleton@geneticdisordersuk.org).
Of note, Jeans for Genes are currently focussing on the experiences of children (under 18) with genetic conditions and their families, therefore, we are looking for people within this age group to be involved.
We would really appreciate your help to be able to secure this grant to create a new educational resource to educate professionals about Fragile X.