PAOLA ZOTTI, our Co-Host in Rome, was unable to attend the amazing event she conceived of with Laura Rossi. On December 11th she fell ill and was taken by ambulance to the hospital, where she died on December 15th. Paola was an amazing woman, full of passion and compassion. Her daughter, Beatrice, has EB. Paola did the work of at least three people in her fight to find a cure for Epidermolysis Bullosa - DEBRA, UNIAMO, EURORDIS and more. She will not be forgotten. If you wish to recognize Paola's contributions, her family is asking that you make a donation to DEBRA Italy.
~ Gena Brumitt Gruschovnik
Born in Rome, Paola Zotti is a cultural anthropologist. EB came into her life when her daughter, Beatrix, was born in 1990.
Paola has been involved in DEBRA Italy since its foundation in 1990, and now is its National Coordinator. Paola serves on the Board of Directors of the Italian Alliance of Rare Diseases, and also EURORDIS, the European Organization for Rare Diseases.
She has participated in numerous events related to rare diseases, particularly Rare Disease Day 2008 and 2009, and spoken publicly on many occasions, to achieve awareness and to raise funds for research.
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Born in Maryland, American expat Gena Brumitt Gruschovnik serves as DEBRA Canada's Director of Awareness & Education. Gena was on the Founding Committee of DEBRA International, then elected to a 3-year term on its Executive Committee in October 2008. She begins her second year as DI Vice Treasurer in 2009. She also served as a Coordinator for DEBRA International for many years, in support of people with EB around the globe. In this role, she assists new EB parents and people with EB who are seeking local assistance, provides them with educational tools, and sometimes arranges for a shipment of much-needed medical supplies. The Coordinators around the world have created a DI committee called "EB Without Borders," and Gena continues in this Coordinator function on the new committee, as primary contact for a designated group of countries.
Gena has written comprehensive articles about EB to create awareness, and is in the mid-stages of a book about the disease. She has given public presentations to boost EB awareness, and was a keynote speaker at Ontario's First Annual Disability Awareness Event. She is the Founder of the Walk a Mile in My Shoes campaign, in recognition of International EB Awareness Week. Prior to the campaign's inception in 2007, she led a successful volunteer effort to pass federal awareness legislation in the U.S. In both cases, she united EB organizations to harmonious effect, and in 2009, Gena found success in bringing EB organizations around the world together in this united endeavor, as "International Epidermolysis Bullosa Awareness Week." This week in 2009 was endorsed by DEBRA International, EURORDIS, CORD and NORD, the latter three being rare disorder alliance nonprofits. Sanction for the week is sought from the World Health Organization and the United Nations, continuing forward into 2010.
Gena's mother, Pat, had Recessive Dystrophic EB, Hallopeau-Siemens; Gena's work in the EB community is a way of acknowledging her mother's courage, and healing from the pain of losing a much-loved parent too soon.
Born in Ireland but living and teaching in Italy since 1991, Margaret’s formal training is in Applied Linguistics. It was through her teaching that she first came in contact with DEBRA Italy. She has now been offering her voluntary assistance to the organization for over 10 years.
Margaret has been ever-present in the international side of DEBRA Italy and provides a much-welcomed, wider cultural perspective to the organization. In 2006, Margaret was appointed as Secretary of DEBRA Italy and in 2008, she attended the EURORDIS General Assembly (European Organization for Rare Diseases).
Margaret continues to offer her support to DEBRA Italy wherever and whenever needed! Now she leads the working party, “DEBRA Italy in America,” devoted to special fundraising events in the United States.
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TOMORROW, THINK OF ME © 2009 ~ All rights reserved. TOMORROW, THINK OF ME is an alliance of affirmed nonprofit charitable organizations dedicated to three objectives: boosting global awareness about Epidermolysis Bullosa (EB); funding the most promising research; and advocating for all who are touched by this disease.
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