Yolaine Dupont – Ella’s Mom

Meet Yolaine Dupont. Mom to angel Ella who died on March 27, 2009 from complications of a rare for of Interstitial Lung Disease.

Yolaine is a bilingual marketing and communications professional, a rare disease leader and advocate, and founder of PVNH Support & Awareness, an organization uniting more than 1,000 families from 47 countries impacted by X-Linked Periventricular Nodular Heterotopia, other neuronal heterotopia disorders, as well as Filamin A deficiency. A speaker, a rare patient affected herself, and daughter to a rare mother, unbeknownst to both, Yolaine is also an independent patient navigator working with individuals affected by X-Linked PVNH, Filamin A deficiency, and Ehlers Danlos Syndrome among other disorders. She lives in Vancouver, BC, Canada.

Yolaine Dupont is hardwired to help others. In her professional career, she has led work for award-winning advertising, government agencies and nonprofits in Canada and around the globe. She always wanted to be a mother and felt her purpose was never realised, that is until her daughter, Ella, was born in 2009. Out of necessity, Yolaine had become an advocate for her own complicated health, and with Ella’s birth, she became one for her, in a fight for her life. Sadly, Ella passed away at just under 8 months of a then unknown disorder destroying her lungs. Yolaine’s mission became clear: find answers, for Ella and for families that would be going through what she went through. Out of necessity again, love for her daughter, and a sense of duty, Yolaine and her medical team found answers, and then she created what she wished she had access to when Ella was sick: an international organization united to educate, advocate and find a cure for X-Linked Periventricular Nodular Heterotopia (X- Linked PVNH) and Filamin A Deficiency. While a cure has not yet been found, PVNH Support & Awareness spans the globe with over 1,045 families from 47 countries receiving support. As founder, patient navigator, a rare PVNH patient herself and leader of the organization, Yolaine helps families navigate this rare disorder, and other disorders that affect the brain and often multiple other organs such as the lungs. Almost 16 years after losing Ella, Yolaine has hosted 3 international conferences, collaborated in research, still leads her organization while offering independent patient navigation to individuals impacted by rare diseases such as X-Linked PVNH, Filamin A deficiency and Ehlers Danlos Syndromes, among others.

She also continues to work in communications and marketing.