So many times this year, I have been asked what we (Narcolepsy UK) do and I have responded with:
We try to do whatever it takes to provide the support that people need, where they need it.
It could be education, employment, home, family, social life or access to benefits, medicine and treatment options. It may be simple or complex, we will still help.
Our Narcolepsy Charter has been exceptionally well received by clinicians and many of the pharmaceutical companies that we work with but we have much more to do before we will be in a place where we believe that we are treated fairly across all areas of our lives.
Whilst we spend as much time as possible raising funds to keep us afloat, it is always very difficult for small charities supporting people with a rare condition. We need your support all year so that we can get on with supporting you, your families, carers and delivering the #NUKCharter and the changes you have identified as being important to you.
We know that Narcolepsy or Idiopathic Hypersomnia are debilitating on a daily basis, and that an extended Christmas retailing period may place personal & financial pressure on you. Whilst we would love you to support our fundraising by taking advantage of #BlackFriday & #CyberWeekend & #GivingTuesday, we understand that not all of you are able to do this for the reason that you may not be sufficiently awake or aware enough to safely shop online whilst maintaining enough cognitive ability to only purchase what is appropriate and/or within budget for you.
If you are able, please consider any of the ways in which you, your family and friends can help us via our Give as you Live programme or fundraising events.
We all really appreciate your support.
Matt O’Neill. Chair, Narcolepsy UK