Ella & Mom in the Media: Interviews and more

Yolaine has been a spokesperson throughout her career as marketer and communicator. She has continued this role in the rare and bereavement worlds. Here is how she makes a difference.



Sounbite on a story similar to Yolaine’s in so many ways : Goldie’s family fights for funding for a diagnosis 





Rare Journeys: Mom, Patient, Advocate.



McGill University: Rare Disease Research Day, Montréal 

Regroupement québécois des maladies orphelines 10e anniversaire et journée des maladies rares,  Hôpital Sainte-Justine, Montréal


Guest speaker at Neuro-MIG/ ‘From gene mutation to animal models of cortical malformations and back’  Conference –  INSERM, Marseille, France

Global Genes DIY in Philadelphia and Houston

Global Genes Advocacy Summit in San Diego


Maux Mystères – Canal Vie (French)


Ehlers Danlos Syndromes Reclassification


Kevin Leger SPFK Award Recipient

2016 World PVNH Conference – Vancouver, BC, Canada


Global Genes  Rare Champions of Hope Nominee – Advocacy

2015 World PVNH Conference, Glasgow, Scotland


Launched PVNH Disorder Awareness Month #MarchOnPVNH


2013 World PVNH Conference, Boston, USA

Interviews with Yolaine Dupont, Founder of PVNH Support & Awareness, Patient Navigator and Patient Advocate. Above in English and below in French.

Guest blog on Boston’s Childrens Hospital website

TV report in French with Yolaine Dupont, Ella’s mom and PVNH Support & Awareness founder, for Radio-Canada’s C’est ça la vie which was broadcast on Rare Disease Day.

Radio interview in French granted by Yolaine Dupont to the Vancouver radio program Boulevard du Pacifique on Rare Disease Day about PVNH and rare diseases.


Launched World PVNH Disorder Awareness Day – August 7

Participated in published literature: https://www.ncbi.nlm.nih.gov/pubmed/22238415

Newsclip from Global News Final on July 27, 2012 about the 3rd annual hockey fundraiser held in memory of Ella. This year, we are focusing on raising awareness for PVNH while raising funds for BC Children’s Hospital

View the clip about a Wish granted to Mary Ella, in memory of Ella. Or read about Mary Ella’s trip on Make A Wish BC’s website


For Miracle Weekend 2010, Yolaine participated in vignettes about life at Children’s Hospital. This first one is about growing up, and specifically for me, seeing Ella grow and live:  http://www.bcchf.ca/video/video.cfm?v=PM-GrowingUp and this next one is about BCCH’s amazing staff: http://www.bcchf.ca/video/video.cfm?v=PM-Staff


In May 2009 Yolaine Dupont participated in 2 radiothons and one telethon, in memory of Ella, to help raise funds for BC Children’s Hospital.

After giving interviews for the radiothons, BCCH’s Foundation contacted Yolaine to ask if she’d be willing to do a TV interview with Global BC’s Chris Gailus to air during Miracle Weekend. She accepted and was very honoured, humbled and anxious to tell Ella’s story.

On a beautiful, sunny and warm morning, Yolaine joined Chris G outside BC Children’s Hospital to talk about angel Ella, her brave fight, the amazing hospital staff who are now part of her family and to ask British Columbians to help her ensure that all kids in BC get the best care they can.

She describes it as such: ‘it was like talking to an old friend about my girl and what we went through. The chat was much longer than the final product, but in the end Global TV and BCCH’s team did a wonderful job. They created a piece which I am very proud and cherish. It is only one of the many ways I am able to help BC Children’s Hospital achieve their goal of caring for and saving children. I also want to point out that the black and white photos in the montage are from Jane Eaton Hamilton, an amazing photographer from Vancouver who donated her time to photograph Ella and our family on March 27, 2009 for Now I Lay Me Down to Sleep.’

You can view the interview here (low res version): Baby Ella_Global 2009

And right here, you can listen to the 2009 interview Yolaine gave to Ocean Radio to help raise funds for BCCH in Victoria, just weeks before the TV interview was filmed and 6 weeks after Ella passed away: Yolaine Ocean Radiothon 2009

On September 7, 2009 on Ella’s 25th-month birthday, Yolaine was interviewed live on a radio show broadcast in Quebec City. The show is called Spécimen rare (Rare Specimen) and addresses one rare disease per show. It is broadcast locally, on the web and is also archived online.  This link is to season 2 – I was the first guest of the season. The interview can be found under Emission 1. Just look for Ella’s photo on the top left of the page where she plays with her stuffed monkey King Louie. http://www.specimenrare.com/saison2.html