Editorial in OIFE Magazine 01 / 2019
“I would so much like young people to have a sense of the gift that they are.” – John Denver.
It took me a good while to find the perfect quote to start this editorial, because for some reason most quotes about youth I found were either bitter or condescending. Instead, I wanted to highlight the potential we have in our young volunteers and how we at OIFE appreciate the enthusiasm they bring every year to our activities. Every organization is dependent of the young talent as well as the seasoned veterans. There’s a constant cycle of getting new people involved. That’s probably why Ingunn asked me to write this editorial, as I am one of the newest members of the executive committee. Let’s get to work then.
January starts another new year for us at OIFE, which means a lot of planning and organizing for the executive committee. Luckily, not all is on our shoulders. There’s always a group of enthusiastic people to take charge of events and posts. I have been at two OIFE youth meetings to date, first one in Norway in 2012 and second time in The Netherlands in 2017. They both were very exciting, because ultimately you are going abroad and meeting people like you, who share the same experiences. So much fun! Organizing events for the youth is best done by the youth themselves. By giving them the reins, you get motivated volunteers and an event to remember. I know the Bilbao Youth meeting will be great!
Motivating volunteers is an art form. What works for one, doesn’t always work for another. I used to be involved in youth politics for several years and it was sometimes hard to get people committed and motivated to do the “duller” tasks. It is important to find out what motivates your team and assign the responsibility accordingly. What am I like as a volunteer? I am the kind who likes to invent and create new things at the start with high energy, but tend to leave it to the last day possible. That’s why it’s good to have different kind of people in organizations. It is good to sometimes take a step back to analyze how you like to work and try to match it to your team. Having to-do lists and schedules help!
The world is so much more open now, because of social media and Internet in general. Everything from important medical information to silly cat videos can be found with just a few clicks on the phone. The problem is that a lot of information is incorrect or is hard find or understand. If you look for research on OI online, you need a medical degree to fully understand it. That’s why it is important that we, as patient organizations and patient representatives, try to make that information easier to understand and digest for the wider audience.
Personally, I am trying my best to keep up with the latest tools and platforms, but it is a lot of work. There are a lot of good tools to create social media posts and free courses to make you a better writer.
That brings me back to our youth, who are fluent in so many apps and tech. Publishing stories on Instagram and Snapchat can teach a lot about creating meaningful content online. And for many, I think it translates to offline as well in self-confidence and presentation skills! These are often skills that you need when applying for work as well. So the bottom-line is, learn from your youth and teach them to become better at volunteer work. By the way, there are hashtags on Instagram like #OICan and #UnbreakableSpirit, where people with OI around the world are declaring that hey, this is something I have, but I can do this. There is always a dash of #OIPride when I talk about OI, because even though it sometimes debilitates me, it has taught me perspective and resilience more than anything. You should check them out if you already haven’t. I wish you readers all a very good year 2019!