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.

tina@debracanada.org

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.

ryan@debracanada.org

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 35 years, I have been involved with Wounds Canada, formally the Canadian Association of Wound Care. I have served on various committees and served on the Board of Directors, including holding the position of Past President.

Several years ago, I became interested in working with young children and young adults affected by Epidermolysis Bullosa (EB). Through my work experience, I have been able to play a small part in helping to raise awareness for EB and I have found this to be very rewarding. In 2011, I also had the privilege of being a part of the development panel for the Best Practice Recommendations for the Management of EB.

As a member of DEBRA Canada for over 10 years, and a Director on the board for the past 8 years; I look forward to continuing to assist in increasing EB awareness and growing DEBRA’s programs and services for our EB member families.

pat@debracanada.org

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.

jay@debracanada.org

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.

dave@debracanada.org

I am from Oakville, Ontario and I currently live in London, Ontario where I am a Lecturer at the Ivey Business School at Western University. I am connected to EB through my cousin, Deanna Molinaro.

Deanna has always been one of my greatest sources of inspiration…she and I were really close. Deanna never once complained about her struggles, and she was always smiling. Her feisty personality, infectious sense of humour, and enduring optimism will always stay with me as long as I live. I am so grateful to have known her.

I have volunteered at multiple DEBRA Golf Classic Fundraising Tournaments where I met so many amazing people who make DEBRA possible. I am so fortunate to have the opportunity to use my skills and work alongside these incredible people to honour Deanna’s legacy.

tomas@debracanada.org

When I was born my mother was gently rubbing my finger in the hospital (when she noticed a blister starting to form), it was then that she had a horrible feeling like something was wrong. Shortly after, I was diagnosed with DDEB.

EB has affected many aspects of my life, but it has also taught me to be a problem solver and sometimes find alternative ways of accomplishing my dreams. I graduated from OCAD University in 2015 with a Bachelor of Design, (after doing my thesis on designing fashionable bandages) for the EB community.

I live in Moncton, NB with my husband Josh and two sons Milo and Laszlo (and our giant dog named Luna.) I am very passionate about sharing my experience with EB and Pregnancy, as well as PGD IVF since I had a hard time finding information. I am a patient representative and speak about my experience at conferences. This journey has also led me to be a part of the Debra International Youth Council where I am an Executive leader.

DEBRA Canada has personally helped me so much throughout my life with the amazing programs and services they offer. It has inspired me to be a part of their mission to help positively support Canadians living with EB.

emily@debracanada.org

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.

irene@debracanada.org

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.

carmen@debracanada.org

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.

micheline@debracanada.org

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.

janelle@debracanada.org

I live in Oakville, Ontario with my husband and our two children and I have a long-standing history with the charity. I first became involved with DEBRA Canada in 1999 and became a volunteer Director on the board a year later. I held a volunteer Director role for 9 years.

Fast forward two decades, and I am thrilled to now hold the Executive Director position and work in tandem with an incredible Board of Volunteer Directors and Officers who work tirelessly to help improve the lives of all Canadians affected by Epidermolysis Bullosa (EB).

I am fortunate to have met so many wonderful DEBRA members over the years (patients, caregivers, doctors, nurses, social workers etc.) and so many more who partner with DEBRA Canada and inspire our team each day to make a BIG impact in the daily lives of our EB community. Please reach out to me at any time, I would love to connect.

ehoyos@debracanada.org