Deborah Capen, Secretary
Debbie contracted TM in 1996 when she was 45 years old. At the time she and her husband owned a remodeling contracting firm. Through self-administered physical therapy (using her Jeep clutch and rubber bands for resistance), one year after she was diagnosed, Debbie was able to walk without assistance with minor balance problems. Her experience dealing with bad doctors and insurance companies in handling her treatment inspired Debbie to return to school to become a medical insurance biller. Ultimately she became a Medical Practice Administrator, which she has been for the past 15 years. Debbie found the TMA by typing “transverse myelitis” into the internet which connected her with Jim Lubin and the Transverse Myelitis Internet Club. Her involvement in the club led to her appointment as Secretary of the Association in 1997.
Gabrielle “GG” deFiebre, Research Volunteer
GG was diagnosed with Transverse Myelitis in December of 2009. While she has made some progress, she remains a C7 quadriplegic and a full-time wheelchair user. In 2010 GG received a bachelor’s degree from New College of Florida, and in 2013 received a master’s degree in public health from the CUNY School of Public Health at Hunter College where she focused on community health and reproductive health. She currently works part-time as a Research Associate at a non-profit called the Reproductive Health Access Project. She is eager to use her skills to contribute to the TMA’s mission and work.
Chitra Krishnan, Executive Director
Chitra’s journey with the TMA began in 2001 when she joined the newly formed Johns Hopkins Transverse Myelitis Center funded through a grant from the TMA. In 2004, she co-founded and led as Executive Director, an initiative called Project RESTORE at Hopkins, to expand institutional research and patient care out into the community and be a vehicle of change to transform the way diseases are traditionally studied. She currently serves as a member of the Board of Ambassadors of Project RESTORE and is an adjunct Research Associate in the Department of Neurology. Prior to joining full-time as the Executive Director of the TMA, Chitra was the Director of Knowledge and Learning at Ashoka Changemakers, a non-profit that creates opportunities for organizations, corporations, and individuals to drive meaningful and measurable social change. She holds a Masters in Health Systems Management from the Johns Hopkins Bloomberg School of Public Health.
Jim Lubin, Information Technology Director
Jim was diagnosed with TM in 1989 when he was 21. Jim is a C2 quadriplegic, paralyzed from the neck down and ventilator dependent. In 1996 Jim started the Transverse Myelitis Internet Club email list-group to connect people with TM. Jim was the New Mobility Magazine’s 1998 Person of the Year. Jim performed all of the Internet and web site work for the TMA prior to 2012. Jim has been written about extensively in books and magazines. He is an inspiration for everyone in the TM community and for everyone who knows him.
Linda Malecky, Treasurer
Linda Malecky received her MBA from Pennsylvania State University before working for 15 years in corporate finance. She is now a full time mother to three children. In addition to her responsibilities as Treasurer of the TMA, she hopes to be an effective advocate for children with TM, ADEM, NMO, and ON.
Roberta Pesce, Research and Project Management
Based in Amsterdam, Roberta graduated from Erasmus University in Health Economics, Policy and Law in 2011. During her academic path, she focused on researching the socio-economic inequalities in health care utilization in the rural areas of India and related the findings to new possible community-based health financing schemes. Over the past year, she has worked at Ashoka: Innovators for the Public, analyzing new disruptive patterns within the global health system -ranging from health systems to start-up business models- and collaborating with the pharmaceutical company Boehringer Ingelheim on health data-mining processes. Over the past six years she has been working for a Dutch publishing firm as Marketing Manager and Executive Editor. Roberta is passionate about health innovations, disruptive change in developing countries and photography. She is a lover of good food, travels, old movie theaters… and Apple.
Sanford J. Siegel, President
Sandy got involved with the TMA shortly after his wife, Pauline, contracted TM in 1994 at the age of 35. At the time of her onset, Pauline was a kindergarten teacher. Currently she is a fourth grade teacher in a public school district in central Ohio. Sandy has been an officer and a board member of the TMA since its inception. Sandy has also served as the TMA’s newsletter and journal editor during his almost two decades of service to the organization. Sandy is a cultural anthropologist with specializations in Native Americans, psychological anthropology and culture change. Sandy has worked as an adjunct professor at Capital University, Franklin University, the Urban/Rural Program of the College of Great Falls, and the Intertribal Education Center of the Fort Belknap Reservation. Sandy retired from the State of Ohio in 2011 after more than 35 years of service. Sandy returned to college in the fall of 2011 and is a photography student at Columbus State Community College. Sandy and Pauline have two sons, three grandsons and one granddaughter.
Rebecca Whitney, Program Manager (Pediatric Program, Patient Ambassador Program)
Rebecca is a mom of three, the youngest of whom was diagnosed with transverse myelitis at four months of age. She worked for 18 years in the insurance/risk management industry in various roles, the last several dedicated to program management. She is committed to learning, educating, and advocating about rare neuro-immune disorders, particularly in the pediatric population. As the Pediatric Programs Manager, she works with patients, families, medical personnel and the executive team to further research, networking, and support of our children. When she needs a “get-away”, Rebecca keeps it simple and enjoys a night in with friends, getting lost in a great book, or knitting with the finest yarn. Her personal mission is to help children and families affected by transverse myelitis heal and maintain hope for recovery.