Truthfully, we have been gone, despite being a little quiet, we continue to fight hard behind-the-scenes for formal approval next year for all of the available treatments.
Everybody’s life gets hectic and we are not immune, and he’s been a busy few months for various reasons. This has led to us not being as communicative as we usually would be, and for that we apologise. That doesn’t mean we haven’t been doing things, we have continued discussions with NICE, Biogen, Roche and others to ensure we are fully prepared and able to fight for access again during next year’s appraisals.
As you know we are a small charity run entirely by volunteers, we don’t have communication managers, web developers, fundraisers or any other paid a member of staff. Despite that we have always been proud to have one of the loudest voices in the room when it comes to fighting for treatment, and it is time for us to pick up where we left off. We can’t do it alone, we need your help, which is why you seen some social media posts about collecting various bits of information, that will continue for the next few months. You may begin to get survey fatigue but please bear with us, we only ask what things that are essential to achieve our goals, Treatment for All!
Anyway, to mark our “relaunch” we have this new shiny website which will be developing over the coming months, containing a whole host of SMA-related information, and more. Of course treatment is our main goal, but SMA doesn’t stop at treatment. There are so many other projects that we want to push forward, newborn screening, other drugs in the pipeline, greater awareness of SMA and how we can influence society to be better when it comes to inclusion.
So, enjoy the new website, and we will be in touch very soon. In the meantime keep an eye on our blog and social media as they kick back into action.
