2019 RAiISE Round Up

The new year is great opportunity for reflection. While its important not to dwell for too long on the past year, or too long making unrealistic, life-changing goals for the future, I believe that its important we take some time to reflect on our achievements and look forward to a fresh year ahead. 2019 has been a big year for RAiISE, but like any it has not been without its challenges. As January comes to an end, here’s a look back at what we’ve been up to and an update on our New Year’s plans.

One of our biggest achievements of the year is finally seeing the completion of our information pack. The idea of a pack for schools, which provides teachers with guidance on how to support students, was first developed by young people, their families, teachers and health professionals at our first workshop in 2016. Since then we’ve been working hard and editing draft after draft to ensure that it is perfect. We are happy to announce that the pack is finally completed and currently being printed for us by the wonderful C3 Marketing to begin sending out to schools! We are looking forward to delivering the pilot of our training programme for schools in the North West in Spring/Summer 2020. Keep your eyes peeled for updates.

We’d like to say a huge thank you to everyone who joined us at our workshop day in August. This was an opportunity for us to present our pack to a group of young people, families, teachers, health professionals and charities and gain their valuable input. We’re also passionate here at RAiISE to ensure that our charity’s aims and strategy are constantly being led by what young people with invisible illnesses want. We had great conversations about the issues which are most important to you, which has massively impacted our priorities for 2020 and the problems we want to tackle through our campaigns. As always, the workshop day was a reminder of the impact of getting people from different backgrounds together and having important conversations. It is only through listening to one another and working together to invoke positive change that we will ever get anywhere.

Young people, parents, charity representatives and education professionals working together at our workshop day in August.

Being such a small charity (and new) charity does not come without its challenges, and at RAiISE we always want to be completely honest about every aspect of what we do. From navigating new ground to trying to secure funding, 2019 was a fascinating year for us to learn, grow and improve as an organisation. We would like to say a massive thank you to our friends at Lupus UK, iCAN Ireland, The Joshua Tree and Metablolic Support UK, to name a few, for being fantastic sources of advice and information. We strongly believe that the best way for small charities to have the biggest impact is through working together and supporting one another. At the end of the day, we are all working for the same reason: to help improve the lives of young people living with invisible illnesses.

In September we welcomed our newest member of the team – Laura Whitty. Laura has joined us as a Trustee and brings a whole host of skills to the team. She has experience in safeguarding, communication and administration in the NHS, local government and education. Laura, like most of our team also has experience of living with an invisible illness. Since joining us, Laura has been a huge asset to RAiISE and we are so happy to have her on board.

Right now, securing funding is a big priority to us. We want to be able to take the information packs to as many schools as possible. We are hugely grateful for any money that comes our way and we are careful to spend every penny wisely. In April, we were delighted to have our first marathon runner, Gwen Peacock, run the London Marathon in aid of RAiISE! It was fantastic to watch her take on the challenge and raise an incredible amount of money which will go a long way to helping our young people. I’ve also never seen anyone look so good after running 26 miles! If you would like to support us you get in touch to chat about fundraising opportunities.

Gwen running the London Marathon in April

A lot of this year has been about spreading the word. When we first started our organisation, we found ourselves always having to explain the term ‘invisible illness’ – now it is regularly used in the media and online. Public perception of invisible illness is seemingly improving, but there’s still a long way to go! We loved working with our friends at The Positivitree on our self-care advent calendar across our social media channels to highlight the importance of looking after yourself at Christmas (and all year round!) This year we plan on expanding our social media presence, highlighting the issues which are important to you, starting conversations and spotlighting conditions/illnesses/topics which aren’t often covered, as well as continuing our ‘RAiISE Your Voice’ series on our website. If there is anything you’d like us to cover or if you would like to write for us, please get in touch!

We’ were also proud to highlight the realities of invisible illnesses to key decision-makers. We were asked to speak at the European League Against Rheumatism (EULAR) Conference in the summer, in which we shared a session with two of the leading professors in Rheumatology in Europe and had the opportunity to share with hundreds of health professionals the day to day problems which young people with invisible illnesses face which may not always be seen as a priority in clinic. We also got to see the launch of the Royal College of Paediatric and Child Health (RCPCH) report on the State of Child Health in Parliament. It was fantastic to have the chance to address politicians about the issues young people with invisible illnesses face and share real life stories, helping to remind people that behind every number and statistic is a real child or young person who deserves better support.

Simon, Robyn and Sophie visit Parliament with Emma Sparrow from RCPCH

All in all, it has been an amazing year for RAiISE. We’ve worked with fantastic young people and families, spread the word about invisible illnesses and have created a resource which we believe will be a great help in getting better support for young people in school. Thank you so much to everyone who has supported us in any way this year. We are grateful of any like, comment, pound or conversation! We feel like we’re at a turning point and are very optimistic for a future of positive change so that all young people are supported and able to reach their potential, despite chronic illness or health condition.