Goodrun. Goodstuff's huffing, puffing fundraising machine
Laura Lowry is raising money for Genetic Alliance UK
Participants: over two thirds of the office are running in one or both of the Henley Half in October or Santa 10K run in December.
Story
The Runners:
Henley Half Marathon – Andrew, Bobby, Fowler Chelsea, Harry M, Chris J, Dylan, Joe and Aaron.
Santa Run 10k – Laura L, Fowler, Katie, Claud, Bobby, Stuart, Megan, Morag, Paul M, Paddy, Harry H, Georgie, Sam Frazier, Jo, Reda, Aaron, Drako, Laura M, Harry M, Simon W, Tim, Gayfer, Tom B, Hannah, Rich Duff-Tytler, Chelsea, Caroline, Prav, Amy, Mike and Daniel.
Why we are supporting SWAN UK:
In the UK each year, an estimated 6,000 children are born with a condition that is likely to remain undiagnosed. Most have physical and/or learning disabilities and many have severe and complex medical needs. Some have life-threatening epilepsy and others are reliant on oxygen, feeding tubes or other medical equipment. Without a diagnosis, their families have no idea what the future will hold for their child, whether they will walk, talk, or even how long they are likely to live. Families struggle to access the information, care and services that their children vitally need. Many feel deeply isolated and alone.
SWAN UK actively brings families together through their online community and face-to-face meet-ups across the UK. They provide information and support, signposting families to relevant genetic research studies and other services. They work with health, social care and education professionals to highlight the issues faced by undiagnosed families.
Securing SWAN's Future:
SWAN UK is only in existence thanks to a limited grant from the National Lottery, through the Big Lottery Fund. This grant ends in May 2016 and they vitally need to secure funds so that they can continue to support families, grow their services and ensure that all families with an undiagnosed child know that they are not alone.
The money raised will help towards the following:
-On the ground support for families of children with undiagnosed genetic conditions in their local area.
-Sending balloons to SWAN UK children during often difficult or traumatic hospital stays.
-Telling thousands of families and front-line healthcare professionals about the support SWAN UK provides.
-Increasing long-term understanding of undiagnosed genetic conditions by developing a resource library of information.
-Sharing their information DVD with Health visitors.