Tina Boileau - President
I am the mother of two amazing kids, my son has Recessive Dystrophic Epidermolysis Bullosa (RDEB) and my daughter is a carrier of the gene. I was first introduced to EB when my son was born 14 years ago. After a very long stay at the Neonatal Intensive Care Unit (NICU), Jonathan was diagnosed with RDEB.
If being a new mother wasn’t challenging enough, we added a curve ball into the mix – EB became a huge part of our lives. Given that EB is a rare disease, there was very little knowledge on EB at the time, and so learning how to care for an EB child came with its challenges, trials and errors. Like other kids with EB, Jonathan is excluded from most social activities including sports. Through his perseverance and resilience, he has a very positive outlook on life regardless of the obstacles EB throws his way.
I became involved with DEBRA Canada in 2012 following the DEBRA International Congress that was held in Toronto. My 14 year old son and I were guest speakers for the patient panel. This was the first time Jonathan had met other people with EB.
DEBRA Canada has helped him connect with others like him and has since given him a sense of belonging in the EB community. Jonathan, like other “butterfly children”, has touched the lives of so many people with his courage and positive attitude. Jonathan has since become my sidekick in launching the Ambassador Program. Together we strive to inform, educate and create awareness about EB. Along with all of the DEBRA Canada members, Jonathan and I work for the common goal of finding a cure for EB.
You can contact me in English or French.
Ryan Hultman - Vice President
EB and many of its terrible manifestations came into my family the day our youngest of two daughters was born. It was a struggle from that first moment to do anything right in her care. All the basics we’d mastered from our first child, such as feeding and touching through basic care had to be completely re-learned. From that point on I realized so much had to be learned and understood with the day to day activities (and what may come in the future), with the complications stemming from my daughter having basically zero collagen binding her skin and mucosal membranes.
I looked to everywhere to gather as much information. Within months of my child’s birth, DEBRA International held a Congress in Groningen, Netherlands, and I went to participate. At that time, I was overwhelmed by the information and the great people within the organization itself and the EB community. Soon after I looked to DEBRA Canada to see how I could help out to further awareness for those suffering with EB.
I was voted in as a Director in March 2012, and shortly after took over as the Medical Assistance Fund Liaison. After a couple years in, I spearheaded a very successful awareness and fundraising event ‘Bella’s Ball’ and became a Vice President. Today, I continue to look forward to improving the organization and everything that affects those living and fighting the EB battle.
Misbah Gopalani - Vice President
Born in Mumbai, India – doctors discovered I had EB Simplex quite early on. However, given it was a very rare condition, the real challenge was being born in the 80’s, without access to the internet to find more information or talk to other kids who found themselves in the same situation.
When I moved to Canada, I was introduced to DEBRA Canada in 2009; which gave me access to a whole new family – people I could share my experiences with, enabling the ability to be a support to others in your own little way, without fear of judgment. Being part of this group has also given me the confidence to try my hand at many sports (cycling, swimming, etc.), which I only dreamed about as a child. Attending the DEBRA Congress in 2012 confirmed my long-time suspicion – this condition may be rare, but there is strength in the unity of our EB community.
I’ve had the opportunity to serve on the Board as Treasurer and I am excited to return to the Board to help continue to create awareness in our Canadian community.
Jay Wilson - Chair
On August 22, 2001, my wife and I had our second child, our first son. The anticipation and enjoyment all new parents experience when their new bundle of joy delivered was quickly replaced with fear, unanswered questions and a sense of being alone. We could see that there was something very clearly missing when he was born, skin. We would be told shortly thereafter that our son had Recessive Dystrophic Epidermolysis Bullosa (RDEB). For my wife and I, dealing with this type of adversity was something made much easier with the support from our families and friends. We did what other parents would do, prepare for this new challenge by learning as much as we could about EB. This led us to DEBRA Canada and the founding President and her spouse. They provided fellowship and support during this difficult time. My wife and I have never forgotten what that support meant to us. It was this that drove me to volunteer with DEBRA Canada.
I joined DEBRA Canada several years ago as a board of director, moved into a Vice President role and then to the President role. I stepped away from the charity in 2010 as my professional and personal life was becoming ever increasingly busy. Currently, I am at a stage now where I can devote more time to the charity as my children are older and the balance has been made easier. Of our three children, both of our two sons have RDEB. I am driven to generate awareness, educate and as equally important, support those touched by EB.
Dave Molinaro - Vice Chair
My name is Dave Molinaro, proud father of two and loving husband to my wife Fran. My family and I reside in Stoney Creek, Ontario. My devotion to EB began 24 years ago when our first daughter Deanna was diagnosed with Recessive Dystrophic EB. When she was born, it took four hospitals in both Canada and the United States to give us advice and a proper diagnosis. Fran and I couldn't believe how difficult it was to gather information and support, let alone connect to other families coping with EB life. We decided to take a stand, to educate ourselves and bring about EB awareness.
With the help from those at the Toronto Hospital for Sick Children (Sick Kids), Debra of America, and other families nearby and across country, we founded DEBRA Canada (a non-profit charitable organization that provides awareness and support to families learning to cope with EB). Over the years, and with the help of a spectacular support group of friends, colleagues and other EB families, I have been involved in fundraising and spreading the word about this disease. I was recently appointed as a Vice President on the executive board of DEBRA Canada. I look forward to expanding my involvement with the organization, and to continue to grow the awareness level and support for EB patient member families across the country.
Erin Hoyos - Secretary
I live in Oakville, Ontario with my husband and our two children. I first became involved with DEBRA Canada in 1999, when my employer at the time (Nu Skin Canada), identified DEBRA Canada as the company’s Force for Good charity. A year later, I was invited to join the DEBRA Canada Board as a volunteer Director and did so for nine years.
In 2009, I stepped down as a volunteer Director and took on the role as part-time Marketing Coordinator/Administrative officer for DEBRA. Today, I hold the Secretary role on the board and assist the Board of Directors fulfill DEBRA’s mission and purpose and help grow the programs for members as a Project Coordinator/Administrative officer.
I feel extremely blessed to work with an incredible team of individuals who all work so very hard to improve the lives of those affected by Epidermolysis Bullosa. I also feel very fortunate to have met so many wonderful families in the EB patient community, and look forward to meeting many more in the near future.
Ida Power - Treasurer
I first became aware of EB in 1998. My husband and I had just opened an indoor golf facility that winter and we were looking to become affiliated with a local charity. Dave Molinaro (founding family of DEBRA Canada), joined our men’s league that same winter and told us about his family and how they were affected by EB. In 1999 we hosted the first DEBRA Canada Charity Golf Classic.
I feel blessed to have met the Molinaro’s. EB touches our family deeply now. Deanna Molinaro is our role model. She is beautiful, strong, opinionated, confident, unselfish, and talented to name just a few of her wonderful traits. Through our friendship I am reminded of what matters in a day. EB is our family too, and we are grateful to know such remarkable families.
Dr. Irene Lara-Corrales - Director
I completed my medical school and pediatric residency in San Jose, Costa Rica at the University of Costa Rica. I came to Toronto in 2005 to complete a clinical fellowship in Pediatric Dermatology. In my first year of fellowship I initiated a research study looking at the effect of antimicrobials in wound healing of patients with recessive dystrophic epidermolysis bullosa. This was the first randomized controlled trial in this patient population and allowed me to apply and complete a Master in Science at the University of Toronto. In order to finish my master degree I extended my training as a research fellow and completed the MSc in 2009. I was recruited to stay and work as a Pediatric Dermatologist at SickKids in 2010. Since that year, I have been an Assistant Professor in Pediatrics at the University of Toronto and staff Pediatric Dermatologist at SickKids.
Since joining the faculty, I have been active in several EB related areas. As soon as I became staff I joined Dr. Elena Pope in the EB clinic and we have been coordinating this clinic together since 2010. The clinic has grown, and now we run two EB clinics per month. I have also been active in EB-related research and have completed both journal and book publications about this condition.
I am passionate about EB and caring for EB patients. I am very excited to join DEBRA Canada’s board and working together towards improving education, quality of life, clinical care and research in EB.
Pat Coutts - Director
I am a Registered Nurse who has worked in multiple areas – medicine, surgery, psychiatry, premenstrual syndrome, family practice, dermatology and chronic wound care.
Over the last 20 years I have been involved with the Canadian Association of Wound Care serving on various committees as well as the Board of Directors, I am currently the immediate Past President.
Several years ago I became interested in working with young children and young adults affected by Epidermolysis Bullosa. Though my work I have been able to play a small part in helping to raise awareness of EB – and this has been very rewarding for me. I had the privilege of being part of the development panel for the Best Practice Recommendations for the management of EB.
As a DEBRA Canada Director, I look forward to helping raise more awareness and assisting in growing DEBRA’s programs and services for our EB member families.
Carmen Liy Wong - Director
I completed my medical degree, pediatric residency, and pediatric dermatology fellowship in Mexico. I have been involved in the care of EB patients since 2005 when I had the opportunity to do an elective rotation at Great Ormond Hospital for Sick Children in London UK. After graduating, I volunteered at Debra Mexico for 8 years and in collaboration with Dr. Julio Salas we provided medical care, financial support, and advice for EB patients and their families. I moved to Canada in 2014 and completed a year of research fellowship and then two years of clinical fellowship in pediatric dermatology at The Hospital for Sick Children in Toronto (SickKids) in 2018, during this time I participated in multiple EB-related activities including and EB- related research under the supervision of Dr. Elena Pope and Dr. Lara- Corrales. I was the first clinical fellow when the EB Advice program, an initiative of DEBRA Canada and SickKids was launched, to help support patients and families affected by EB throughout Canada. I also participated in writing the first consensus guidelines for the diagnosis and management of anemia in EB patients, a DEBRA International project.
I was recruited to work as a Pediatric Dermatologist at The Children’s Hospital of Eastern Ontario in Ottawa (CHEO) in 2018. Since that year I have been Assistant Professor in Pediatrics and Dermatology at the University of Ottawa and continue working in EB- related activities.
I am passionate about EB and caring for EB patients and very excited to join DEBRA Canada’s board to keep collaborating towards improving the quality of life of patients with EB and their families.
Chantal Lapointe - Director
I completed my bachelor’s degree in physiotherapy at the University of Montreal in 1991. Since graduating, I work at CHU Sainte-Justine in Montreal with children. I had the chance to help various pediatric patients: traumatology, burns, incontinence, neurology, orthopedics, oncology, rheumatology, lymphedema. I completed a master's degree in rehabilitation at the Université de Sherbrooke, Quebec in 2016.
Since 2015, I joined the multidisciplinary epidermolysis bullosa team at CHU Sainte-Justine. I accepted this new challenge knowing full well that the rehabilitation needs of these children are many and that they were until now, very little filled. With my team, we cover four to six clinics a year in addition to more regular follow-ups as needed.
In 2017, I joined a group of international experts, headed by DEBRA International to build a clinical practical guide in physiotherapy.
I am pleased to join the DEBRA Canada Board of Directors. Together, we will work to improve the quality of care, clinical services offered, research and especially access to all knowledge about the disease. Children are my daily motivation and it is by helping them that I become a better person.
"A man is never as big as when he knelt down to help a child." Pythagoras
Deanna Molinaro - Director
I have always believed actions speak louder than words, wherein the simple stroke of a brush emanates volumes about the person who yields it. First and foremost, I’m an emerging contemporary artist from Hamilton ON. I am currently self-employed as a freelance painter/stylist and a recent Sheridan College graduate. At birth, I was diagnosed with Recessive Dystrophic Epidermolysis Bullosa (RDEB).
As a long time patient with RDEB, advocate for EB awareness, and proud daughter of DEBRA Canada’s founding members; I have lived and breathed advocacy before I even truly understood the meaning of the word. This being said, I feel very passionate about my position on the Board of Directors. I am currently at a good place in my life, where I have the ability to give back and support others the way my DEBRA Canada family supports me.
By utilizing my personal experiences, artistic abilities and position within the EB community; I hope to provide guidance, patient support, and help bring about more knowledge and exposure by spreading EB awareness to society’s younger demographic.
Often times having EB is unbearable, but it has made me the stronger more resilient person that I am today. I wouldn’t wish it on anyone, but I am better for it.
Please feel free to reach out; I look forward to connecting with all of you.
Micheline Boileau-Bougon - Director
I am the proud mother of a 15-year-old son named Dominic. In 2001, I began my journey as a teacher for the Ottawa Catholic School Board. I recently discovered that I am a carrier of the EB gene. My relationship with EB started 20 years ago, with the birth of my godson, Jonathan Pitre.
Twenty years ago, little information or help was available and EB was the worst disease you never heard of. This skin condition was unknown to most. My sister Tina and Jonathan worked tirelessly to spread awareness and to raise funds for research. DEBRA Canada became the perfect platform and a great partnership came out of a common goal, which is to find a cure. I have supported several endeavors, events, and fundraisers as a volunteer for many years.
The recent loss of our beloved young hero, Jonny Boy made our commitment to support DEBRA and our continued efforts to spread awareness more important than ever before. I am looking forward to joining the dynamic team at DEBRA Canada and I am hoping to bring valuable contributions with my recent nomination as a member of the Board of Directors.
Janelle Kujawa - Director
My name is Janelle Kujawa. I am from Abbotsford, BC. I am married to my husband Todd and have two daughters Kourtney and Shaelyn. Kourtney was born with RDEB; but sadly passed away 5 days after her 25th birthday in September 2022. I am a maternity nurse and a small business owner specializing in hand made natural skin care.
Over the years, we have received medical assistance from DEBRA Canada from offsetting the cost of travel to a stair lift. The funding benefited not just Kourtney but our entire family. Through DEBRA Canada we met so many other families affected by EB and built a support system.
As a DEBRA Canada Director my hope is to give back to many other people and their families with EB. But what I am looking forward to the most is continuing to raise awareness and honouring Kourtney’s legacy.