From Canada to Australia to the USA, to the UK, New Zealand, Ireland, Germany, South Africa, Belgium, Spain, Poland, the Netherlands, France and many more countries – my quest to find others like us who are affected by PVNH is equal to that of the families finding us. Most importantly, PVNH Support & Awareness TM and Ella have touched countless people. There are now 500+ families in 33 different countries in our support community – all have a form of PVNH or another neuronal heteropia confirmed diagnosis, such as SBH (Subcortical Band Heterotopia). Many more have additional cortical disorders and all strive to find asnwers and receive better care by joining our quest for awareness.
Whether it is moms and dads needing support; families dealing with rare disorders who happen to stumble on Ella’s story, adults affected, or families looking for answers with regards to a diagnosis that is in line with Ella’s disease (PVNH) in particular or another neuronal heterotpia disorder, PVNH Support & Awareness TM and Ella have a voice around the world.
And that’s just the beginning!
Please help me broaden PVNH Support & Awareness TM and Ella’s horizons by sharing our story. And your story.