On September 23rd 2004, our son Ingo Knippenburg was born in Amsterdam, The Netherlands. He was diagnosed with myotubular myopathy (MTM) and sadly passed away in February 2005. Ingo had the most beautiful blue eyes and in his short life he touched many hearts. My sister Marije and I are joining The London Hope Walk 2023 in memory of Ingo and all the other children and adults with MTM. We hope to raise awareness and research funding to find a cure for myotubular myopathy. It feels extra special to us that this year’s Hope Walk is on Ingo’s Birthday, September.23rd.

Myotubular myopathy is a rare and devastating muscle weakness, affecting mainly boys, from birth. It severely affects the muscles used to swallow and breathe. These babies & children are at a constant risk of dying, and usually from complications due to simple colds and coughs from which they are literally too weak to recover.

There is no public funding available for this rare condition - the research that has been funded is all thanks to the support of those living with the condition, and their families, friends and colleagues. We simply wouldn't be able to continue to fund world-class research projects without our supporters.

Thanks for supporting us, and helping to bring forward the day when there is a cure or treatments for this devastating condition!

PS Ingo in newspaper NRC: https://rb.gy/bzbu2