About Ella’s Mom – Yolaine Dupont
My name is Yolaine Dupont and I am Ella’s mom.
I first created Everyone Loves Little AngelsTM (ELLA) to pay tribute to Ella and to pay-it-forward in her memory before we received a formal diagnosis for her. Although ELLA is not yet a foundation, the organization raises funds for sick children’s causes. And thanks to my under-graduate degree in psychology and my experiences as a bereaved mom and mom to a child with a rare disease, I created two different parent support groups which I moderate: a bereavement group and a group to unite families faced with PVNH : PVNH Support & Awareness upon receipt of Ella’s diagnosis.
I am CEO of PVNH Support & Awareness and patient navigator for families. Affected myself, just like my mother was, a fact confirming my suspicions, I have been working as a volunteer to solidify the links forged with experts around the world with whom she collaborates, some for the last ten years. I also aim to create them with the new generation and advances research, in addition to continuing to support affected families. I launched the PVNH awareness day in 2012 (August 7), the awareness month (March) in 2014, and hosted three international conferences in 2013, 2015 and 2016, with the next one being held in Utrecht on April 18-19, 2020. I hold a has Bachelor of Arts in Psychology, have undergone several training in grief, rare disorders, drug development and epilepsy. I am an expert in marketing and communication, a consultant and public speaker. I am a former member of the BC Children’s Hospital’s Partners in Care committee and an active member of COST Action 116: Neuro-MIG (European group of experts in cortical malformations of development), Canadian Organization for Rare Disorders, EURORDIS, Regroupement québécois des maladies orphelines, Global Genes Foundation Alliance, Rare Epilepsy Network and Rare Disease Foundation.
Besides fundraising for BC Children’s Hospital, I am a volunteer sports photographer for SPFK, benefiting Make-A-Wish Foundation of BC & the Yukon, and I raise funds and awareness for multiple other causes such as:
ELLA – Everyone Loves Little Angels TM
Now I Lay Me Down to Sleep
Rare Disease Foundation
Canuck Place Foundation
Variety the Children’s Charity
Children’s Miracle Network