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As she retires, IMP's Founder Elja van der Veer, looks back over the last 10 years...

"Musing about 10 years of IMP I would like to take you back to the very beginning, the origin.

Erik

Years ago my younger brother Erik (pictured left) died of mitochondrial disease. His death was the reason for me to join the small mito-subgroup of the Dutch Muscular Disease Association (Spierziekten Nederland). In the process of Erik’s disease our family did not have proper, solid information about the disease and about research developments (possible drugs or therapies) taking place. I wanted to improve that.

In the years that followed I myself was diagnosed with mitochondrial disease. And in 2010 our daughter Renske (pictured right and on the home page) became ill and turned out to be affected by mitochondrial disease too. She was 15 at the time.

All the sadness, pain and anger that I felt turned into upsetting amazement. Some questions kept coming back in my head: ‘Why doesn’t the world know about this horrific disease? Why doesn’t anybody do something Renske
about this?’

Of course, there were other people in the world involved in mitochondrial disease, groups of patients and their families fighting against the disease and advocating for patients. And researchers and clinicians working on mitochondrial medicine.

But somehow we were not connected. We did not even know what was happening in our neighbouring countries.

Spierziekten Nederland gave me carte blanche to start and try organise an international network for mitochondrial patients. Researchers, clinicians and industry were all already working together on a global scale, so why not patients? We needed an international organisation to represent mitochondrial patients at a worldwide and professional level.

And if there is an international network we can just as well learn from each other, inspire each other and share our knowledge and insights.

So I started approaching the mito ‘colleagues’ in the neighbouring countries: Belgium, Germany, France and the UK. And the response was similar from everywhere: yes, of course we should join forces!

IMP Founding MembersWe met a couple of times informally, and were soon joined by representatives from patient organisations from Spain, Italy and the USA. In 2011 IMP was officially founded, by nine founding member organisations (right), already representing thousands of mitochondrial patients.

Now, 10 years later, we can look back at many successes. Mostly with very few resources and sometimes overcoming our own cultural and character differences. But it is a long list and I am very proud of this.

I will not exhaust you with all our achievements on the list but I do want to mention the fact that by now all the stakeholders in the mito community know who IMP is, what we do and where they can find us. This fantastic international network makes it easy for IMP to initiate studies, participate in research projects, work together on different issues, gather relevant information, educate about the burden of the disease in everyday life and call upon specialists to support individual patients wherever they live.

My personal story, my sadness, sorrow and pain, turned into something worthwhile and powerful. Isn’t that how many patient advocacy groups start?  I feel so lucky to have had the opportunity to meet so many inspiring people. With some I have worked together since the beginning in 2011! We all contributed to a solid and strong organisation.

The story of IMP always makes me think of a famous Irish saying. Let me end with it:

From tiny acorns grow mighty trees."

 

 Farewell to our Founder 

Thank you Elja, for the dedication and passion you have shown over the years. Your relentless advocacy for mito patients has changed the lives of many families around the world. Thank you for your kindness, generosity and inspirational vision for a world where national patient organisations collaborate to improve the lives of all mito patients.

Watch Elja speak about her work with IMP over the last decade as she steps down as Chair of the Board.
Elja's Video 

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