“A few months ago, Metabolic Support UK invited me to work with them on their new emerging project, “NextGen” (more about this later); manage their Instagram account for the day; and, of course, create a blog post for them afterwards! Some of you may remember that I’ve done some blogging for Metabolic Support UK in the past (my most recent post was about my trip to Cornwall – https://www.metabolicsupportuk.org/guest-blog-chloes-cornwall-adventure-preparing-for-an-adventure-with-an-imd-part-3/), but it was still such an honour to be asked to work with them. I had heard of their conference and was already considering attending, since I missed out on the NSPKU’s conference earlier this year. So this worked out well!
I travelled to Birmingham for the conference, both excited and extremely nervous. Those closest to me will know how this event was such a massive step out of my comfort zone, but something I was absolutely determined not to miss out on. I found travelling to Birmingham was the easiest part for me (I think my solo trip to Cornwall had helped prepare me for this aspect). The conference itself was what I was most anxious about. I was worried about meeting a bunch of new people and interacting with them in the activities. However, I surprised myself and found that once the initial ice-breaking was over, I got into the swing of things and really enjoyed myself!
What is NextGen?
NextGen is a community where young people aged 12- 25 living with Inherited Metabolic Disorders can come together to make friends and share their experiences with one another. If you’re aged 19-25, you can register as a Delegate, which means you also get to engage with this community; help towards research; and become an advocate for the patients, having already grown up with an IMD yourself (I am also a Delegate). I think that NextGen is essential to the IMD community. Simply having the opportunity to meet others with your condition, or one similar, and have conversations about your experiences of school or mental health is so important. I still vividly remember my first NSPKU conference when I was eight years old and how it honestly changed my life. Because for the first time, I met other children like myself. These conditions are so rare. So it means people living with them rarely cross paths, but NextGen enables this to happen. Having met the young people, who are already a part of this wonderful community, has only made me realise more that it needs to continue to grow. If you are interested in joining NextGen, or perhaps have a child, who you think would love to join, please sign up. I have left Sally’s email address at the end of this post!
I had a great time working with NextGen at the conference; it’s rewarding to think that I’ve hopefully helped some of the young people I met, to feel reassured that all will be okay. But I’m also happy that I’ve helped myself. Starting up my personal blog about PKU (https://thepkulife.blogspot.com/) has enabled me to engage more with my PKU community online – I’ve “met” a whole bunch of new people over on Twitter! However, it’s very rare that I actually meet other people with PKU in person. So, it’s always a pleasant surprise when I do! At the conference, I met a man called Chris, who is a Community Ambassador for Metabolic Support UK. It was such a shock to discover that he has PKU too, but it was great to chat about our experiences.
I hope to continue to attend more events, such as Metabolic Support UK’s conferences, in the future and to continue to meet others like myself. I would encourage anyone, who isn’t already involved with Metabolic Support UK and NextGen, to get involved – it’s great to have another community, as well as NSPKU, to turn to if you ever need support.