Just by looking after your diagnosis or your child’s, you become an advocate. In learning and educating yourself and others, you become an advocate. First and foremost, an advocate for yourself or for your child. And then, slowly, an advocate for PVNH.
Every day brings a new opportunity to be a PVNH advocate. If you are comfortable with the idea, talk about it, blog about it, share in social media, reach out to organizations who may have an interest in PVNH and continue to further your knowledge of PVNH.
I, for one, have been very vocal about Ella’s PVNH and how it has affected her, me and my family. Since Ella’s passing, I represented the PVNH Support & Awareness TM at the Canadian Organization for Rare Disorders (CORD) Conference in 2010 in Ottawa, in the American College of Medical Genetics’s 2011 Conference in Vancouver, thanks to Genetic Alliance which granted me registration, as well as in Montréal in 2013 at the Internation Epilpsy Congress, at Global Genes Patient Advocacy Summit in 2015 and 2019, at the ASHG conference in 2019 and at our three international conferences in 2013,-15 and 16- again representating PVNH as a family advocate.
I also make it a point when I travel to visit hospitals, both pediatric and adultm to meet with neurologists, geneticists, pulmonologist and cardiologists and present them PVNH Support & Awareness.