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                 DEBRA International Congress 2012

                                  Toronto, Canada

DEBRA Canada was delighted to host the annual DEBRA International Congress, held September 13-16, 2012. The venue for the conference was the historic Fairmont Royal York Hotel in Toronto, the first time the Congress took place on North American soil.

This highly anticipated event was co-chaired by DEBRA Canada President Gena Brumitt and Dr. Elena Pope of The Hospital for Sick Children. David and Fran Molinaro, DEBRA Canada's founding family, movingly welcomed international guests to the event. The Congress was inspired by the "inukshuk", a stone cairn landmark made roughly in the shape of a man, used by the Inuit as a guidepost to show the way in the wilderness.

An inukshuk has several meanings, but the most prevalent is: "You are on the right path." This image was used by DEBRA Canada to symbolise our dependence on each other because, if you remove one stone from the inukshuk, the structure is weakened. This reminds us of the value of strong relationships throughout the DEBRA organisation and with our dedicated medical community. Inuksuit stand along Canada's northern shores, and are considered to be a national symbol of Canada.

"It was an unmitigated honour for DEBRA Canada to host the international congress", said DEBRA Canada President Gena Brumitt. "This was an incredible opportunity for our national chapter, truly inspiring for our board of directors, EB clinic teams, and our members to see the international EB community represented, all under one roof, here in Toronto."

Attendees from over 25 countries around the globe – including DEBRA national chapter and "grassroots" chapter delegates, people with EB and caregivers, dermatologists, pediatricians, nurses, scientists, and EB experts from multidisciplinary fields – came together to participate in an enlightening holistic conversation; to increase participants' awareness and understanding of EB, and to share medical best practices and advances in EB treatment and research.

The four-day event commenced with a uniquely-Canadian beginning. A First Nations Welcome Ceremony with smudging was performed by Dan and Mary Lou Smoke. Dan is a member of the Seneca Nation, and Mary Lou the Ojibway Nation. The Smokes are an exceptional couple who have fostered and advanced healing and harmony among people for many years. They teach at Western University and are regular commentators on TV, reaching a television audience of 8 million viewers. Mary Lou has sung traditional aboriginal songs at international venues, including the 1976 Summer Olympics. Their lasting message to the Congress audience was: "Never give up on your dreams."

The congress schedule highlighted presentations from 33 international speakers and included:
· Family / Patient-Care Day on September 13
· Clinical / Research Day with DEBRA International's General Assembly on September 14-15
· Workshop Day with interactive break-out sessions on September 16

A Gala Dinner in the Royal York's legendary Imperial Room featured music from Canadian recording artists Andrew Cole and Suzie McNeil, and the art of world-renowned artist Steve Tracy. All three send post-event best wishes to DEBRA International, and continue to be staunch DEBRA Canada supporters.



13th SeptemberEB Patient Care Conference "Family Day"
Jemima MellerioEB clinical manifestations
Anna MartinezExtracutaneous manifestations of EB
Ellen PfendnerGenetics 101 and how it works for EB
Alan ArbuckleSkin care in EB: from the point of view of a paediatric dermatologist
Kenneth GoldschneiderMedication treatment of pain in EB: how to choose
Best clinical practice guidelines for pain in EB
Lynne HubbardThe role of nutrition in EB: families and clinicians working together
Nimrita AujlaSchool problems: bullying
Anne Lynch-JordanParenting an EB patient
14th September
EB Clinical Update
Jackie Denyer & Elizabeth PillayEB wound care guidelines: UK
Maya El-HachemEB wound care guidelines: Italy
Elena Pope & Gary SibbaldEB wound care guidelines: Toronto Accord
Anna BrucknerEB and bone health
Susanne KrämerEB and dental problems
Irene Lara-CorralesRole of Trimethoprim in RDEB
15th September EB Research Update 
Ken NischalOccular surface in children with EB
Elena PopeEB Disease Severity Outcome Score
Jakub TolarStem cells and their transplantation in EB
Peter MarinkovichGene transfer for human recessive EB (RDEB)
Gabriela PetrofThe role of allogeneic fibroblast therapy in RDEB
David WoodleyProtein replacement therapy
Sarah AtkinsonsiRNA therapy
16th September
EB Speciality Workshops
Jackie Denyer, Michelle Lee, Elizabeth Pillay & John NeinkensNursing
Nimrita Aujla, Kristina Soon & Katherine MossPsychosocial: what we know about Psychological Function and EB
Lynne Hubbard, Jennifer Phillips & Leslie HaynesNutrition
Michelle Wood, Carissa Shotwell, Kristina Steinau & Rachel BoxPhysical and occupational therapy
PART I - Introduction: occupational therapy and physiotherapy for patients with EB
PART II - The adult hand and EB
PART III - Features of EB that affect function - assessment and treatment

Photo Gallery

  • Front view of Fairmont Royal York Hotel in Toronto
  • Powerpoint slide: "DEBRA International congress 2012 September 13-16, 2012 Toronto, Canada"
  • Congress participants in the conference room
  • Anna Kemble Welch (DEBRA New Zealand) with microphone, speaking up from the audience
  • Congress participants in the conference room
  • Dr. Francis Palisson (DEBRA Chile) giving a presentation
  • Poster "Plight of the Butterflies" showing children with EB from different countries
  • Dr. Elena Pope (The Hospital for Sick Children, Toronto, Canada) giving a presentation
  • Erin Hoyos and Misbah Gopalani (both DEBRA Canada) at the registration desk
  • Group picture of DEBRA Spain team, Dr. Rainer Riedl (DEBRA Austria) and Vlasta Zmazek (DEBRA Croatia)
  • Dr. Anne Lucky (Cincinnati Children's Hospital Medical Center, USA) and Dr. Susanne Krämer (Dentist, DEBRA Chile) giving a presentation
  • Local family living with EB in the conference room
  • Gena Brumitt (DEBRA Canada) giving a presentation
  • Close-up of congress attendees in the conference room, listening and taking notes
  • First Nations Welcome Ceremony with Dan and Mary Lou Smoke, spreading the message "Never give up on your dreams"
  • Dr. Alan Arbuckle (Dermatologist and member of DEBRA of America's scientific advisory board) giving a presentation
  • Congress attendees at the buffet
  • Dr. Anna Martinez (Great Ormond Street Hospital, London, UK) giving a presentation
  • Social evening programme in a salsa ba; group picture, FLTR: Polona Zakošek (DEBRA Slovenia), Anna Kemble Welch (DEBRA New Zealand), Ingrid Jageneau (DEBRA Belgium), Vlasta Zmazek (DEBRA Croatia) and Evanina Makow (DEBRA Spain)
  • Dr. Mona Abdullah (United Arab Emirates), Jonathan Pitre, a young boy with EB, and Gena Brumitt (DEBRA Canada)
  • Group picture: Members of DEBRA International Executive Committee and some national DEBRA groups' representatives; FLTR; back: Shoaib Gopalani (Canada), Vlasta Zmazek (Croatia), Anna Kemble Welch (New Zealand), Gena Brumitt (Canada), Michael Fitzpatrick (Australia), Evanina Makow (Spain),  Rick Gallagher (USA), Robin Hood (UK), John Dart; front: Graham Marsden (UK), Jimmy Fearon (Ireland), Avril Kennan (Ireland), Rainer Riedl (Austria), Francis Palisson (Chile), Brett Kopelan (USA)
  • Social evening programme: Group sitting in salsa bar
  • Bag labelled "DEBRA International congress 2012 Toronto" with logos of DEBRA Canada, Hospital for Sick Children and DEBRA International.