Gifts to the Community

We couldn’t have put together a more diverse group of people to celebrate this month who are making a difference in the EB community. Each one that we note has found a way to use their unique talents to touch the lives of those diagnosed with epidermolysis bullosa and their families. So in the spirit of the season, we thank them for what they have delivered and encourage them and others to keep sharing their gifts with all of us.

  • Eddie Vedder and wife Jill McCormick
    Eddie Vedder, lead singer of Pearl Jam, is used to having fans gush about his music but he gained a new following when he and his wife Jill coordinated a special concert to benefit Heal EB, for which she serves as a member of the board of directors. We appreciate big voices lending their talents to bring attention to something that many in the world may still not be familiar with. So thank you, Eddie and Jill, for all you do to spread the word and make others aware of our community and in particular, the need for medical research funding.
     
  • Oualid Haddad
    Congratulations to this EB researcher on recent recognition as he received the Mitacs Postdoctoral Award for Outstanding Research Achievement. You are probably not familiar with Haddad’s name, but the University of Guelph postdoctoral fellow from the Department of Integrative biology has been hard at work with innovative research which could indirectly play an important role in the future of EB research. During his fellowship, Haddad was involved in the construction of a unique device that led to the development of a motorized incubator which enables researchers to study how live cells respond to large-scale mechanical strain, giving them the potential to observe live cells at the microscope over multiple days, something that could be of particular interest to EB researchers across the country. For more information about Haddad’s award, click here.
     
  • Organizers of DEBRA International Congress 2012
    Earlier this year, I shared my comments about this year’s DEBRA International Congress 2012 event in a blog discussing the event’s highlights, but I wanted to take this moment to recognize the efforts of the group who put on such an informative and valuable event. This year’s DEBRA chair was Gena Brumitt, who serves as president for DEBRA Canada and as a vice-treasurer on the executive committee for DEBRA International. Dr. Elena Pope chaired the medical portion of the conference and is medical director of the EB Clinic for Sick Children which is affiliated with the University of Toronto. These women and a fantastic team put together a memorable event that gave attendees real insight into the direction of medical research related to improved treatments and the search for a cure for epidermolysis bullosa. For more information about this year’s event, visit www.debracongress2012.com.

DEBRA International Congress 2012

Last month, I had an opportunity to attend DEBRA International’s annual meeting of DEBRA groups from countries all around the world. DEBRA Canada and Canada’s Hospital for Sick Children (“Sick Kids”) served as hosts for the DEBRA International Congress 2012, which ran from Sept. 13-16, 2012, at Toronto’s Fairmont Royal York Hotel. It was a fascinating and educational experience to be able to interact with a mix of physicians, nurses, researchers and families representing 25 countries, all coming together to share information and collaborate on common goals for the benefit of EB families.

DEBRA International made it known at the event that one of its top priorities is to encourage collaboration among the various DEBRA organizations worldwide to define and establish EB care guidelines in a number of clinical areas to be published on its website as well as within medical journals throughout the world. Their goal is for these guidelines to be made available to physicians everywhere to better understand the EB patient and best serve these patients and their families. Once created, the guidelines will be made available in as many languages as possible to serve medical communities across the world. But as with any set of guidelines, creating these take time. There are currently efforts in place to establish wound care, nutrition and pain management guidelines, and dental guidelines were just formally published by the group last month. Click here for the link to DEBRA International’s dental guidelines for EB patients.

This year’s program was broken out in such a way that each day had a different focus. Day One featured segments on EB family topics, including pain management, school issues such as bullying, skin care and nutrition. Day Two concentrated on the various care guidelines that several countries have in development with particular emphasis on the various wound care efforts from Italy, Canada’s Toronto Accord and the UK.

Day Three was all about research and offered a closer look at the EB studies in progress currently as doctors from across the world discussed their work. Dr. Jakub Tolar addressed the congress about his bone marrow transplantation procedure; Dr. Peter Marinkovich introduced his study, gene transfer for human recessive dystrophic EB; Dr. David Woodley discussed protein replacement therapy; Dr. Sarah Atkinson of the UK discussed her siRNA Therapy study; and Dr. Gabriela Petrof also of the UK shared the latest about her clinical trial studying the role of allogeneic fibroblast cell therapy in RDEB patients. During the final day of the conference, Day Four, attendees were able to be part of break-out workshops covering such specialized topics as nursing, nutrition, physical and occupational therapy and psychosocial issues associated with EB.

During the conference, DEBRA International unveiled its newly upgraded website and gave others a chance to educate attendees about their programs. For example, I learned about EB Without Borders, a group of DEBRA organizations from around the world who have joined forces to support EB patients and their families in those parts of the world where there is no DEBRA organization already established. And once again, I had a chance to meet up with the EBCare registry team, a group gathering data to establish an EB database. I learned something new that I was not aware of – that those families like mine who had lost a child previously to EB can also register with the database; it is not solely families currently facing it on a daily basis. Their representatives encouraged all families at any time impacted by EB to get in touch with them to get registered and become part of this valuable international database. The more information they are able to gather, the more thorough and complete picture they can build about EB families – who they are and how they are being impacted by this devastating disease.

All in all, it was an enlightening conference for attendees fortunate enough to take part. I’m happy to be back home from travel time away from the family, but it was educational and very encouraging to get to hear from and meet so many people committed to working together to better understand EB, to improving treatments for EB and to developing a cure.

For more information about this year’s event, check out DEBRA International’s 2012 Congress website at www.debracongress2012.com.