We would like to introduce a guest blog section on the website. These blog posts are going to be far from being medical, they are intended to be “By Stickler people for Stickler people”, so if you have anything you would like to write about that you think others with Stickler would be interested in then please get in touch. You don’t have to be a writer, and you don’t have to write pages and pages, ideally a post a week (by a different person each week not the same person!) would be awesome, but even one a month would be great and spread awareness. A sample idea to kick it off would be if any parents out there with teenage Stickler kids would like to write about transition from primary school to secondary school, even better is if they could then convince their child to write a follow up from the childs point of view too! One of the things that came out of the UK conference this weekend I personally noticed was how much everybody was commenting on how much information they got from just speaking with other families. Another series for the blog posts could be “Living with ….” i.e. “Living with limited vision”, “Living with chronic pain”, “Living with hearing loss”. If you know anyone who would be interested please share this post with them. These blog posts will remain on the website and be indexed by Google so will act as a great resource to anyone searching for information on the condition.
Fresh off the back of the UK conference this weekend I would like to ask if any of you who attended would email me ([email protected]) any photo’s you took and don’t mind sharing. I would like to post some pictures of the weekend on the website. If you have any feedback about the conference please email [email protected] we would really like to hear what you thought and any improvements we can make for next time.
Today we have launched our new website, there is still lots of work to be done and features to add, but this is the first draft. Please let us know if you have any feedback through our contact us page.