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BC Place in Canada and Spinnaker Tower in the UK to glow for PVNH Awareness on Aug. 7 thanks to bereaved Vancouver mother
VANCOUVER, BRITISH COLUMBIA, CANADA August 3, 2016 –Emirate’s Spinnaker Tower in Portsmouth, UK will glow pink and BC Place in Vancouver, BC, Canada will be lit pink and yellow in celebrations of the 5th edition of World PVNH Disorder Awareness Day, also known as PVNH Day, on August 7th, 2016. Homes and businesses around the world will also be decorated for the occasion.
Originally created in Vancouver, Canada in memory of Ella Dupont Bedassie, PVNH Day brings attention to the neuronal heterotopia disorder in support of affected children and adults around the globe. Yolaine Dupont, Ella’s mom, launched the event in 2012. A rare neuronal migration disorder that often goes unrecognized for years, Periventricular Nodular Heterotopia (PVNH) took her daughter Ella’s life in March 2009. Since then, Dupont has been tirelessly working to bring light to this rare and sometimes fatal disease, and educating families and medical professionals alike. She also provides support to 300+ families in 27 countries.
Dupont, whose familial diagnosis runs over three generations, a fact discovered only after her daughter’s passing, speaks of the importance of awareness: “When Ella was hospitalised, no one knew what made her so sick. We were told she may not survive. There was no diagnosis to grab hold of and no organizations providing support for what was robbing my daughter’s life. Having PVNH Day helps families on so many levels – from educating care givers, family members and friends, to raising funds for research and ultimately providing better care for affected individuals. Awareness weaves a thread of support for those going through what I experienced, pretty much alone. Awareness saves lives’’.
On August 7, 2016, Ella Dupont Bedassie would have turned 8 years old. To mark PVNH Day and Ella’s memorial birthday, Dupont is inviting people around the world to join her in the social media conversation about PVNH. To show your support, wear a pink and /or yellow piece of clothing or accessory or decorate your home or place of business, take a photo and share it @PVNHday in social media using the hashtags #PVNHday, telling people why you do so. Most of all, Dupont invites everyone to have fun on Ella’s 8th birthday. A Facebook virtual event has also been created: http://www.facebook.com/PVNHday froActivities are planned in Vancouver, BC from 6:3opm onwards and around the world all day.
WHAT IS PVNH?
Periventricular nodular heterotopia (PVNH) is one of those rare disorders you may not know you have. It is a rare neuronal migration disorder characterized by the presence of nodules of neurons (gray matter) in the wrong spot in the brain. It comes in different forms and often affects multiple organs.
Seizures occur in up to 90% of patients, and learning difficulties are not uncommon. Some individuals have profound motor, cognitive and developmental delays and some have connective tissue problems which can affect joints and blood vessels and lead to gastrointestinal, pulmonary and heart complications, among other issues. A brain MRI investigation usually confirms the diagnosis. There is no cure to PVNH; only symptoms can be treated. If unrecognized and untreated, these problems can lead to death.
About PVNH Support & Awareness PVNH Support & Awareness is a non-for-profit organization created in 2009 by Yolaine Dupont as a legacy for her daughter Ella Dupont Bedassie. Ella was 7 months and 20 days when she died from respiratory failure, the cause of which was not known. Six months later, confirmation came that Ella had the rare disease Periventricular Nodular Heterotopia, with Ehlers Danlos syndrome (PVNH w/EDS) due to a Filamin A (FLNA) gene mutation. Further testing showed that PVNH ran in Dupont’s family whom is one very rare family with 3 generations of affected members. As founder, Dupont currently provides support to more than 300 families who have a PVNH diagnosis, in 27 countries. All are looking for better care and treatment options to live life to the fullest. In October 2016, Dupont will host the third World PVNH Disorder Conference in Vancouver, BC, where specialists from the U.K., USA, Germany, Netherlands and Canada will meet with families.
PVNH Support & Awareness connects families together and educates patients, family members and medical professionals about Periventricular Nodular Heterotopia and other neuronal heterotopia disorders. Our goals are to positively impact the lives of affected patients, to open Centres of Excellence for PVNH Care, to fund research studies to better manage symptoms, find new genes at cause, and hopefully one day, finding a cure.