Gena Brumitt's Page

« Greetings! I'm Gena Brumitt (nee Gruschovnik), Founder and Principal Ambassador of "International Epidermolysis Bullosa Awareness Week" ( I am currently Director of Awareness & Education on the board of directors of DEBRA Canada. I serve as Vice-Treasurer on the executive committee of DEBRA International, and as a Regional Envoy of the DI committee, EB Without Borders, primarily representing North America, the Middle East, Southeast Asia and Caribbean countries. The members of EB Without Borders proactively assist people in countries where there is no DEBRA or EB support organization, to learn about EB, and find them the help they need inasmuch as possible. My late mother, Lillian "Pat" Barbrey, had RDEB Hallopeau-Siemens. My two siblings and I are EB carriers; my sister has two sons and I have a daughter who are unaffected but MAY be EB carriers - we don't know for sure. I am an American living in London, Ontario, Canada. I am a strong advocate for people with EB of all types and subtypes, especially in regard to human rights and EB awareness. I am a writer, editor and commercial property manager, and I have written articles and speeches about rare diseases in general, and EB in particular. There is also a book in development, intended to help new EB families. I am also a public speaker who seeks to educate and enlighten people about EB and the benefits of our DEBRA community, including presentations as far away as Abu Dhabi, which led to new DEBRA organizations under development in the United Arab Emirates and Iran. I am honored to have many friends in the global EB community, and hope to make many more! Please "friend request" me on Facebook, and join our International Epidermolysis Bullosa Awareness Week group there. Your efforts to create EB awareness and fundraise for EB organizations during IEBAW (October 25-31 each year) are most welcome! »

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  • published over 3 years ago

    In reply to throat blisters : Diamonds, please allow me to add my input. First, let me say, I am not a medical professional so I will not presume to give you medical advice. I'm the president of DEBRA Canada and we work ...

  • published over 3 years ago

    In reply to throat blisters : If you wish, please feel free to phone me this evening before 11. I am at 226-448-3412, that is my cell number. Gena