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With trips to Parliament and the Department of Education, talks with graphic designers and charity registration, it’s safe to say that 2018 has begun well for RAiISE.

 

Amongst the flurry of ‘New Year, New Me’ posts and already broken resolutions, I’ve found it difficult to reflect on the past year and plan progress for the new one. RAiISE continues to grow at an alarming rate and we really are on the cusp of our products becoming real and beginning to make a difference. New Year is a time of change for many, but for us I hope that it simply means becoming bigger and better than ever and truly improving the day to day lives of young people living with invisible illnesses.

Naturally this growth can be scary. As RAiISE goes from a small idea I had in my bedroom one day, it can often be overwhelming just how exciting things are getting. Now, as an 18 year old student who’s never had a ‘proper’ job, filling out Charity Commission registration forms and writing business plans for funding bodies seems somewhat surreal and I definitely have a case of ‘imposter syndrome’ which can be quite terrifying. But just over two years down the line, the main feeling I still have with every step forward we take is excitement. This was shown most recently when earlier this week myself and Trustees Sammy Ainsworth and Simon Stones attended a meeting at the Department of Education. After discussing the future of RAiISE and receiving incredibly valuable advice from Ayath Ullah, whom we hope to work very closely with in the future, we were almost jumping for joy as we left the building (almost bouncing past the guards and forgetting to give back our security passes!)

Following this meeting was a quick dash across the road to visit the Houses of Parliament. After winning the Student of the Year Award in October, it was lovely to be invited to a celebration which looked at all the amazing work colleges are doing and hearing the success stories of student who had often had to overcome adversity. It was a great event hosted by the Association of Colleges and Peter Kyle MP. It was also lovely to meet Andrew Stephenson MP afterwards who spent time with us as we got to watch a Parliamentary vote.

After such a good first couple of weeks, we are looking forward to keeping this up throughout the year. Already we have been in touch with a graphic design company which means we can finally begin production on our information packs and resources. We’re also going to be introducing a new feature on our blog in which young people with invisible illnesses share their stories and experiences. We’d love to hear from as many people as possible as well as parents to get their perspective. If you have a story to tell, please get in touch!

I hope everyone has had a great start to the New Year and I am beyond excited to see where this one takes us!

After taking October to settle into University, November has definitely made up for having a quiet month! Meetings, conferences and, excitingly, an awards ceremony! Every year the Association of Colleges host their annual conference, discussing all aspects of the education sector and best practice in colleges around the country. Alongside this conference runs the Student of the Year Awards, featuring three categories celebrating students and apprentices who have achieved significant things during their time at college.

I was nervously awaiting the imminent results day when I received a call at the end of the summer from Nelson and Colne College, where I had spent the last two years completing my A Levels. I was absolutely delighted to be told I had been chosen as the college’s Student of the Year. At this point I was unaware of the scale of the award. The way I understood it, I had been chosen by my college as their Student of the Year, but what I didn’t realise was that I had been put through to the Association of Colleges shortlist! In fact, it wasn’t until a couple of weeks later that I discovered I had made it into the final three in the Young Student of the Year category, which focuses on students aged between 16 and 18. I was absolutely amazed to have got so far in a nationwide competition!

The ceremony was held two weeks ago in Birmingham. Naturally, my thoughts were consumed with what I was going to wear (this was definitely an occasion for new shoes!) The evening was a brilliant night celebrating colleges which were making an incredible impact in education. It was wonderful to meet all of the other candidates to hear all about the work which they had been doing over the past couple of years. I was particularly inspired by Joyce Abumujor, who was an Adult Student of the Year nominee. She shared with me her story of growing up in a very oppressive community in her home-country of Nigeria. She talked of leaving to come to England where she has gained qualifications in plumbing and bricklaying. She was now expanding her knowledge even further and studying for a law degree, with hopes of using this to return to her home and fight for women’s rights to education.

By the end of the night, after eating far too much of the delicious food, I was absolutely delighted when it finally got to my category and I was announced as the winner! It was incredible to be given this prestigious award after having the last few years of my education being so bumpy (to say the least) after my lupus diagnosis. If anything, I saw this as a true indication that having a complicated and debilitating condition such as mine, really shouldn’t have to stop me, or anyone else in a similar position, from achieving academically. I’ve always enjoyed school and academics and, whilst my illness changed a lot of things about my life, I hope that this award can show that it did not change that. This was made all the easier by the high standard of support I have received from not only my hospital, Alder Hey, but also, vitally, my college. The individual health care plan, which was created at the start of my course by myself and the college nurse, made my A Levels so much easier and the support from my teachers was unwavering.

The receipt of this award has really made me all the more passionate about ensuring that all students, no matter what their health needs, are given the correct support to achieve their potential. It was so wonderful to get this recognition for the work which has been going on with RAiISE for the last couple of years, but I’d also like to give a special mention to all our Trustees: Jenny Preston, Sammy Ainsworth, Marie Rowe, Simon Stones and Robyn Challinor who are so passionate about the work we are doing together and are absolutely vital members of this team. As always I am also so grateful  and want to give my thanks to everyone who has supported RAiISE in any way, attended a workshop or fundraiser or contributed to our growing network of exceptional young people who are living every day with complicated and incredibly challenging invisible illnesses.                                             

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 26^th 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 28^th 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 raiiseuk@hotmail.com

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.

 

It’s been a while since my last blog post but that certainly doesn’t mean that we haven’t been busy with all things RAiISE! It has been an incredibly exciting few months as I have been promoting and sharing the project as we become closer to finishing the first draft of our information pack.

Continue reading “Content Development, Promotion and Awards!” →