Organization: PVNH Support & Awareness

On August 7, 2012, bereaved mom, Yolaine Dupont, surrounded by families and friends of patients affected by Periventricular Nodular Heterotopia (PVNH for short) as well as medical professionals launched the very first World PVNH Support & Awareness Day on what would have been her daughter Ella’s fourth birthday.

Ella passed away, undiagnosed, in March 2009 at the age of 7 months and 20 days. It took a lot of hard work and dedication for Yolaine to finally get a formal confirmation of what had taken her daughter away and that diagnosis came six months after Ella’s passing: PVNH with Ehlers Danlos Syndrome.

Once the diagnosis was received, further testing indicated this was actually a rare familial disease which had been passed on over three generations. Dupont took matters in her how hands to change the outcome of other patients’ lives affected by PVNH and that is when PVNH Support & Awareness was created as a non-profit organization out of Vancouver, BC, Canada. Today, it supports nearly 100 families affected by PVNH.

For the launch of World PVNH Disorder Awareness Day, Dupont created a pamphlet that describes PVNH to newly diagnosed families and medical professionals not familiar with the disorder. She then created an event in the social media world where everyone was invited to wear either pink, yellow – both colours having a tie to Ella’s life – or a combination of both (clothes or accessories), take a picture, share it and post about PVNH on social media platforms in support of families worldwide. In addition, Dupont created a proclamation of August 7 as World PVNH Disorder Awareness Day and on that very day, medical leaders on PVNH in New Zealand, Italy, Netherlands, France, Canada and the USA all signed the proclamation to help Dupont get it officially recognized internationally. The day culminated in Vancouver by Dupont co-signing the proclamation herself, among friends wearing PVNH Awareness buttons and of course, pink and yellow.

Dupont is in touch with other PVNH leaders in multiple countries to ensure everyone working on PVNH research and whom may across it professionally when seeing patients is aware and supportive of the proclamation. Families affected by the disorder will also share both pamphlet and proclamation with their medical teams.

Overall, early reports show that hundreds of people got active talking and posting about PVNH in social media, virally reaching over ten thousand others with their actions, many of whom became aware of the condition by asking “what’s PVNH?” and later showing posts of support. New PVNH families were also made aware of PVNH Support & Awareness’ existence and requested support for their families. Furthermore, World PVNH Disorder Awareness Day was featured in an article in the Liverpool Echo in the United Kingdom, thanks to PVNH affected Finley’s mom, Sara and on a CBC (Canadian Broadcasting Corporation) radio show where Dupont was interviewed just before the Vancouver held event.

But the work is not done yet. PVNH leaders from many more countries need to get on board and more professionals educated, in particular pediatricians, gastrointestinal specialists, and other specialists which are subject to seeing PVNH patients come through their practice. Our goal is to help our families teach not only their medical teams but also support system, including schools and caregivers about the disorder so that children are kept safe.

Finally, we hope to unite our families and PVNH medical leaders in the Fall of 2013 for our very first conference!

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