About Gena

Gena Brumitt Gruschovnik
Born: Olney, Maryland
Email Gena: gena@ebrelay.org

Gena is an EB advocate who resides in London, Ontario, with her Canadian husband, Peter, and vivacious 13-year-old daughter, Liberty Siena. Gena's mother, Lillian Ann "Pat" Barbrey, was diagnosed with RDEB Hallopeau-Siemens subtype through the National EB Registry. Pat was 65 when she died from an EB-related pseudomonas infection. Gena's mother is her inspiration for becoming an EB advocate; in the early 1980's, they were involved in "grassroots" DebRA of America. Meeting Arlene Pessar and Eric Lopez, and being present during the first nationwide EB conference and Congressional hearings in 1984, were life-changing events.

Gena has spent more than 20 years in facility/property management, most recently managing a portfolio of courthouses, police detachments, provincial government office space, and two psychiatric hospitals. She would like to transition into the non-profit sector in the near future. Gena has owned and operated a writing/editing business, "ON the MARK" since 1997, and is a member of London Western Toastmasters.

Since 2000, Gena has spent many hours on her "work of heart," a book about EB presented in layman's terms to be used as a tool for people with EB and their families, caregivers, educators and new medical practitioners, with an emphasis on the EB community itself. Many families in the EB community have been interviewed by Gena or written a short piece about their own experiences with EB. These "real life" works will be included in a very special section of the book. Gena enjoyed meeting many of the families who submitted their story by email at the DebRA Patient Care Conference in Nashville in 2006. The EB Relay event will be the subject of the last chapter in the book, which is titled, "Good Things Come in SMALL Packages."

Gena serves on the Board of Directors of dEBra Canada, where she concentrates on public relations and community campaigns. In the last two years, she has come to the aid of people with EB and their families around the world through referrals from DebRA International, and through this work, has borne witness to much human suffering.

Since 1999, Gena has actively supported the work of DebRA of America and EB Medical Research Foundation to facilitate their objectives and fundraising efforts. In 2005 and 2006, she was the impetus behind press releases and many of the volunteer efforts in the U.S. to pass Bills S.RES.180 in the Senate and H.RES.335 in Congress, for "National Epidermolysis Bullosa Awareness Week." With the efforts of DebRA and EBMRF, a small group of hardworking volunteers, and the Peshkur family, a culture of harmony and complete success were accomplished. Gena always has multiple balls in the air between work, family, and volunteer projects.

An American citizen (albeit an expatriate), Gena is the Founder and Event Organizer of the "Walk a Mile in My Shoes" Relay-Rally. During National EB Awareness Week 2007, she plans to traverse the entire route from New York City to Stanford, California, along with a team of EB advocates. You are invited to take part in this event, for as much time/distance as you can commit! Please check out the entire EB Relay website for details of this event and related opportunities.