Welcome to our brand new official website! I’m so excited that we now have this platform to share our content, resources and updates as production of our information pack for schools continues to be in development. I wanted the first blog I wrote for our site launch to be filled with positivity and excitement regarding our latest developments. I want to (and will) write about my recent trip to the International Children’s Advisory Network Summit in Orlando, the fundraising events we have planned or the RAiISE branded products which will be on sale soon, however the last few weeks have allowed me a lot of time to reflect on what RAiISE is, our values and aims. In order to succeed, RAiISE must be an organisation which is honest, communicative and empathetic, reflecting the themes identified by our focus groups as most important in working within education and health. Therefore, I’ll admit that the last few weeks have been difficult.
Following the end of my A Levels in June, I was so excited to being able to dedicate my summer to working hard on RAiISE, and making all of the ideas that we have all been discussing for the past few months a reality. However, as I planned for an intense few weeks of hard work, I was hit with a terrible summer cold. Whilst this may sound somewhat trivial, I wanted to use this as an example of how invisible illnesses can be misunderstood. As many of you may know, I have lupus, a chronic autoimmune diseases, and it was difficulties with a lack of support from my high school which inspired me to found RAiISE. With lupus, illnesses such as the common cold which can be frustrating for most, results in days of barely being able to move out of bed, let alone out of the house, or even to a desk to complete the work I’ve been so looking forward to. As I write this, I am still recovering, as the debilitating fatigue has slowly begun to lift for the first time in two weeks, and my brain finally feels able to form a sentence! Fatigue, I have found, is one of the most difficult things to explain to those who don’t experience it, and often one of the biggest misunderstandings related to my invisible illness. Whilst this is by no means the worst I have ever been health-wise, and I have certainly not needed any specific medical treatment, I think it is important to acknowledge that illnesses such as mine are often a constant struggle, even when it is generally under control, as mine has luckily been for several months.
On a more positive note, there have been some more exciting updates for RAiISE over the past few weeks as well. Last month I was given the incredible opportunity to travel to the International Children’s Advisory Network (iCAN) Summit in Orlando, Florida in which we spent the week meeting with Young People’s Advisory Groups (YPAGs) from all over the world. The groups are made up of young advocates advising healthcare and research on local, national and international levels. The first YPAG was set up by Patient and Public Involvement Manager for the National Institute for Health Research and RAiISE Committee member, Jenny Preston, back in 2006 at Alder Hey Children’s Hospital in Liverpool. It was wonderful to see that what began as one small group has been able to expand and build a network globally, through iCAN and the recently formed eYPAGNet, or European Young People’s Advisory Network. As I spoke to young people and parents from across the world, I realised that the issue of invisible illnesses being misunderstood is far too common, and something which needs to be addressed internationally. It was a great week spending time with old friends and making new ones.
Whilst I was away, I received two exciting pieces of news. I had submitted applications to present RAiISE at two conferences and received word from both that they had been accepted. In September, I will be presenting at the Paediatric Rheumatology European Society Congress in Athens and in November, I have the opportunity to present later in the year in London at INVOLVE, a conference celebrating patient involvement in healthcare and research. Both of these are brilliant opportunities to spread the word about RAiISE in the world of healthcare.
One of our main focuses currently is fundraising. As the pack gets closer to completion, naturally we need to raise the funds for its production and distribution. To begin, I’m looking forward to the RAiISE Launch event, which will be held at my home on Saturday 26th August. At the event we’ll be showcasing the latest draft of the information pack we have been creating, giving people the chance to view all our work. We’ll also be selling the first batch of our brand new RAiISE merchandise. Our talented volunteer, Janice McCann, is a keen supporter of the organisation and has kindly donated a huge array of merchandise, including Swarovski crystal jewellery for sale. We’re also looking forward to our second fundraising event, ‘RAiISE the Roof’. There’ll be live music, DJs, and lots of food at Waddington Social Club on Saturday 28th October. It will mark RAiISE’s second anniversary and will be a fantastic opportunity to celebrate all the work we have done so far. If you are interested in buying tickets, please contacts us at firstname.lastname@example.org
Despite illness over the past few weeks causing a few setbacks, there have still be so many positives, largely due to the amazing support from everyone who contributes to RAiISE. Thank you to everyone who plays a part in this, helping us make a real difference to countless young people with invisible illnesses.