Monday, December 31, 2018

The Year is over - Happy New Year 2019!

Some photos that summarize my year - a few of the moments I cherish in my memories.

I'll write more in the beginning of the new year! See you on the other side :)

Thursday, December 20, 2018

A silver lining

It's holiday time and it's not the easiest season for some of us. There's a lot of feeling in the air of "finishing up the year" and "how behind am I and I'm supposed to take off in the middle of it?". It's been too many long days and working late, and then the early morning wake up calls on wondering just a little on "why am I doing this?".

Well, every so often there comes that one moment when I realize why I do what I do. And why I feel that I try to make a difference. And that it is worth it. This week had one of those moments.

Part of my job is to handle a program where we share information and biological samples with academic researchers. If anyone wants something, they send me an email. This email address is spread around through PR campaigns and through websites. It also helps that my place of work is not unknown. One morning I saw an email from a parent, who has a child with a very rare serious disease. They were asking for help and wanted to get information on how to best treat their child. It's not the norm that non-researchers use the email. It's not for the public. However, it doesn't mean it's not answered. I reached out to the MDs and asked if they had any suggestions. Their response "we will take it from here, thank you!".

It may sound small. It may even sound like it didn't have much to do with me and my actions. But knowing that I was part of building this program, and running it everyday, being able to give a helping hand, to give some hope and connect people - that's a huge part of why I do what I do. Those moments, while they seem small, are what makes it worth it. Because while they might seem small, they are by no means insignificant. Rare diseases, and especially in children, are exactly that - rare. And if ever there was a time the saying "it takes a village" is appropriate - to me it is that time.

Being able to share information, treatments and unpublished results to help better and to make more understanding - that's something that is near and dear to my heart.

It was exactly the reminder that I needed at this time. When the world is going nuts with commercial shopping and unnecessary plastic gifts, the reality of what really matters is good to realize. That small moments of hope and action can make a huge difference in the course of a life.