Black Dragon Games Melton Mowbray
Black Dragon Games first annual Tabletop 'til you drop
Fundraising for Reverse Rett
Verified by JustGiving
Members of the Black Dragon Games community will be leading our first annual 24 hour table top games marathon, raising money for Reverse Rett - a charity working to research and ultimately undo the effects of Rett Syndrome.
Rett syndrome is a condition very close to the heart of the Black Dragon Games family.
Jennifer, daughter to Richard & Liz and granddaughter to Linda, was diagnosed with the condition at a young age.
Black Dragon Games wish to support Reverse Rett’s efforts to work against this devastating and life-altering condition.
Rett Sydrome is a neurological disorder that affects about 1 in 10,000 girls and women. It is typically caused by a single mutation on a single gene on the X chromosome. Almost all cases of the condition are caused by random mutation rather than being inherited.
The gene that causes Rett Syndrome is essential to normal nerve function, so children with Rett syndrome are typically unable to speak, walk or use their hands. Breathing problems, epileptic seizures, tube feeding and lifelong care are the norm for people with Rett Syndrome.
Jennifer is fortunate enough to be at the more capable end of the Rett Syndrome spectrum: she can walk but not run, she can talk with a limited vocabulary and she can use her hands for tasks such as eating. She is now 10 years old and starting to read and add. She is blessed to be one of the most joyous people any of us will ever meet in our lives, despite the severe limitations that her condition places upon her.
Despite all of these developmental limitations, research has shown that people with Rett Syndrome do not have brain damage. They know and understand much more than their bodies allow them to show – but they are locked in, trapped by a body that cannot obey signals from their brain.
Jennifer could not be a more clear example of this: she has a clear understanding of the world around her and how things work, but her language and physical abilities are limited so that she cannot express herself fully or manipulate the world around her. Despite all this she finds a way, substituting the words that her brain will not allow her to form with ones that mean something similar so that she can make her thoughts known to the rest of the world.
People with Rett Syndrome will usually undergo lifelong treatments for their symptoms, but there currently no direct treatments or cures for Rett Syndrome itself. However, new drugs and gene therapies which aim to directly treat the cause of the disease are entering the trial phase right now, with a long-term goal of completely reversing the effects of Rett Sydrome and one day creating a world where infants can be cured as soon as they are diagnosed.
Reverse Rett are a charity whose vision is a world where children with Rett Syndrome are diagnosed quicker, earlier, and more effectively than they are right now. A world where much more is known about the condition and factors that affect progression. A world where at every stage of development, treatments are available to counteract its symptoms. A world where we ultimately deliver a cure and enable people with Rett Syndrome to lead free and healthy lives.