Dr J C Pompe

Dr J C Pompe
Discoverer of Pompe disease

About this blog

What you can read here is the story of the development of enzyme replacement therapy (ERT), the first effective treatment for Pompe disease. It is an incredible story, rich with events, characters and science. Above all, it is the story of an international community of scientists, doctors, patients and companies, working together towards a common goal.

It is not a story that features in Geeta Anand's book, The Cure , or the film based on it, Extraordinary Measures despite the fact that they are ostensibly about the development of ERT for Pompe ( you can link straight to the relevant articles covering the events described in the book and film here, here and here).

This blog represents my small attempt to set the record straight and to give the story back to its rightful owners - the international Pompe community. It is written here in roughly chronological order i.e. you'll need to start at the bottom of the April 2009 archive page and work your way up.

It is also a personal account and, although I've tried to make it as objective as possible, there is an inevitable degree of subjectivity. For that reason I have included contributions from other members of the worldwide Pompe community and would be delighted to receive more. Feedback is also welcome.

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Tuesday, 22 December 2009

Towards a Therapy for Pompe Disease: founding IPA conference

The founding conference was held on 2-4 July, in Naarden, a town in The Netherlands, entitled Towards a Therapy for Pompe Disease. It was the result of much organisation, of course. And the credit for it being the well-organised event it was rests with the VSN, who provided (and provide) the IPA secretariat. Credits coming shortly. Meantime, at the risk of jumping to the end, here's the 'team photo' taken for posterity. I have a list of names of attendees and will have a stab at a full 'who's who' when I get the chance. All help gratefully received!

OK, here's my off the top of my head indentifications. Far left is Christelle Faure (that's her dad behind her, I think), then front row (L to R) Commander Prasad, Randall House, Marylyn House, Nina Raben, Ria possibly?, Ans van der Ploeg, Thomas Schaller (John Hopwood over his shoulder on the right), not sure, I C Verma, Maryze seated, Haske  van Veenendaal on the left, with Anton behind her (Andy Amalfitano behind Anton, in the green shirt), Victor Magdaraog,Ysbrand Poortman .

A full report of the conference, with abstracts, is available online at the IPA website. So I'll add the things that can't be found in the dry factual accounts here.  I would also welcome contributions from other participants in this little piece of history.
Posted by Kevin O'Donnell at 15:43
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