I first attended the NPUK conference in 2015 to talk about my experience as a parent treating his daughter with VTS-270 on a compassionate use. I have “met” many of the NP-C families through Facebook but it is always different (and better) when you meet them in person. You realise that our struggles are no different from each other. We all have the same concerns, same worries. We all try to do our best to stay afloat while dealing with this horrible and cruel disease.
The NPUK meeting was very well organised. The information was free-flowing and at a great pace. You never felt like you were getting overwhelmed. It was also great to hear other researchers and clinicians present their data and findings on Niemann-Pick.
My personal highlight was meeting Gloria and Roy. Very inspirational couple that have been dealing with NP-C for decades.
I just attended the 2016 NPUK meeting and was glad to see that things are still the same and well organised. I have made additional life-long friends, which also means additional audience for my jokes!
Looking forward to the 2017 meeting.
Harry Koujaian is father to Alec, and Hayley (who has Niemann-Pick type C). He fights for her life by pursuing investigational treatments and promoting research.
For further info please contact the NPUK Central Office by either email at: info@npuk.org, or by telephone on: 0191 415 0693.
We hope to see you all in September!
