& the Bossies
This charity is very close to our hearts as it directly affects our little family. Twyla aka Little Bossie, was diagnosed in 2014 with a rare metabolic disorder called CDG-1C or ALG-6 CDG. There is no known cure for this disorder and it is unfortunately life limiting, however don’t let that get you down... Our little Bossie is the driving force behind Bossie’s Biltong – Beer’s Best Buddy®. She inspires us daily with her strength and resilience and her infectious smile. Every day there are new patients added to the CDG family and it is charities such as CDG-UK that can help parents like ourselves to deal with the daunting task of raising a life limited child along with all that goes with it and to offer the support, contacts and resources to understand the condition. A big thank you to Steve O’Neill and the team at The Local Food Festival for their support of CDG-UK at all of their events throughout 2022.
Who Are CDG UK?.
CDG UK is a charity set up by the parents of affected families in order to provide support networks in the UK. Their first objective is to raise awareness of this extremely rare disease and to reach out to other families who are affected by it. As more health professionals have become aware of CDG, more children and adults are being diagnosed in the UK, and as we know that a rare diagnosis can be isolating, and they wish to extend a hand of friendship to others facing the same. The second objective is to raise funds for research into this group of currently untreatable diseases. According to Professor Jaak Jaeken, the first professional to identify CDG, ‘there wards are many but the workers are few’. In other words, there is so much to be learnt about CDG and so much more that can be done in terms of diagnosis and possible therapies, but there are very few researchers and doctors working in this area at the moment. With funding, they wish to change this by collaborating with researchers and health professionals with one end goal: a cure for CDG.
How Can You Help?.
For more information please visit About Us–CDG UK (cdg-uk.org)If you wish to donate please click here (CDG UK-JustGiving)You can now also create a donation each time you purchase an item online through smile.amazon. Each time you purchase your items at the normal price Amazon will make a small donation. Click here to learn more