Board of Directors
Meet the MitoAction Board of Directors: People committed to improving the everyday lives of those affected by mitochondrial disease
Cristy Balcells RN MSN, Executive Director
Cristy Balcells RN MSN is a mom of three, including Eva, her youngest child who has Leigh's disease, a serious form of mitochondrial disease. Cristy earned a Master's in Community and Public Health Nursing from the University of Virginia in 2002 and subsequently created a community-based education program for new parents and their babies. This program, "BabySense," won a national nursing program award and has been implemented in several community hospitals in the Southeast. As her professional interests evolved into serving pediatric special needs populations and their families, Cristy began to develop program proposals for groups such as MitoAction as a way to reach and serve this under-recognized medical population. Cristy then accepted the Executive Director position with MitoAction in November 2006, and believes that through education, awareness, and advocacy, this growing non-profit organization can have a tremendous impact on the quality of life for patients and families living with mitochondrial disease. Read the Letter from the Executive Director.
Email Cristy at director@mitoaction.org
Susan Harms, Events and Development Director
Susan Harms Stover, the former Director of Advanced Media for Comcast Spotlight in Boston, MA, has an extensive background in sponsorship program development and event planning and management. She lives in New Hampshire with her husband and son. Susan is active with a number of charitable organizations and is hopeful that her work with MitoAction will help to raise awareness and everyday recognition for mitochondrial diseases. Email Susan at events@mitoaction.org.
Ginger DeShaney, Membership & Support Coordinator
Ginger spent 24 years in the journalism field as a reporter, editor, and copy editor. She started her career at small newspapers in Wisconsin and worked her way up through bigger newspapers, with editing positions at the Chicago Sun-Times, the Boston Herald, and the Boston Globe. She got her feet wet in the nonprofit world by helping Boston-based One Village at a Time and being elected co-president of the Josiah Quincy School Association, the 501(c)(3) organization at her daughter’s elementary school. With MitoAction since March 2010, some of the most rewarding moments of Ginger’s professional life have come from doing whatever she can to assist Mito families. Email Ginger at support@mitoaction.org.
Executive Committee and Board of Directors
Paul Harty, President
Paul Harty became president of Seven Step Recruiting in 2008. Seven Step is a leading provider of large-scale hiring solutions, using a unique team-based model of RPO services delivery. Paul is responsible for the company's strategic direction, and oversees the delivery of all client solutions. Prior to joining Seven Step, Paul spent 15 years building and managing a successful technology recruiting and placement businesses. He lives in the Boston area with his wife and four children. His son, Matthew, has Pyruvate Dehydrogenase Deficiency. While searching for answers for his son's disabilities and managing through a long diagnosis process, Paul discovered MitoAction as a strong support system and a way to gain knowledge about Mito. Paul became an active member and now serves as President to guarantee that other caregivers or patients who are faced with Mito have access to continued support and knowledge that is so necessary when dealing with rare disease.
Email Paul at president@mitoaction.org
Gordon Russell, Vice President
Gordon Russell is a native Bostonian. He grew up in Weston, MA and attended Hobart College and the Boston University School of Fine Arts. He lost his wife, Sandra, to MELAS in 2008. Gordon is the owner of In The Pink Stores Inc., which he and Sandra founded in 1996. In The Pink operates six retail clothing stores in Massachusetts. Gordon has two children, Buck and Jonathan, and resides in Wellesley, MA. During Sandra's struggle with MELAS, Gordon and his boys experienced firsthand the support and guidance provided by MitoAction and came to fully understand how critical a role the organization plays. Gordon is serving on the MitoAction board to support MitoAction's evolution and to ensure MitoAction will always be positioned to provide vital support to individuals and families affected by mitochondrial disease.
Cynthia L. Sabbag, Treasurer
Cindy is the primary caregiver for her daughter, Bethany, since her birth 28 years ago. Bethany requires hospital-level home care due to Complex III Mitochondrial Disease with severe Pseudo-obstruction, learning disabilities, developmental delay and visual impairment. In addition to caring for Bethany, Cindy works part time as a consultant for the Medford Family Network. She has been involved with Girl Scouts for more than 30 years as troop leader and is treasurer for the Medford Service Unit. Cindy serves on the Board of Directors for Tri-CAP. Cindy's degree in Early Childhood Education was profoundly interrupted by Bethany's illness. Bethany's mitochondrial disease progressed undiagnosed for the first 17 years of her life. As one of the founders of MitoAction, Cindy knows firsthand how difficult it is to travel this path, often unassisted, unrecognized and misunderstood. Her hope is that her work with MitoAction will make the journey a little less frustrating for others.
Tom Keery
Thomas R. Keery, II is the General Partner of the Keery Family Limited Partnership, a real estate partnership with commercial and residential properties in Massachusetts. Prior to entering the real estate business, Tom was president of Frost Motors Inc., a Newton, MA dealership holding company. In operation since 1934, Tom joined the family business upon his graduation from Ithaca College in 1975 with a degree in Communications. Since 1985, Tom had been the Dealer Principal, and had successfully grown the business, acquiring and selling several dealerships. In 2002, he was named the Massachusetts recipient of Time Magazine's Quality Dealer Award, which is given annually to automobile dealers in recognition of their leadership in community and Industry affairs.
Tom is a member and past president of the Rotary Club of Newton, a member of St. Peter's Church in Weston, a past director and officer of the YMCA, and a member and past director of the Newton Needham Chamber of Commerce. He is also a member of the Newton Elks. Tom's sister Sandra passed away in 2008 due to MELAS.
Born in Newton in 1953, Tom resides in Weston with his wife, Laura, where they raised their four children. He enjoys golf and cycling.
Philip Borden
Philip Borden is a General Partner for Riverside Partners, a private equity firm based in Boston. Philip is responsible for the firm's investments in healthcare companies. Prior to joining Riverside, Philip attended Duke University and earned an MBA from Harvard Business School, where he was a Baker Scholar.
Philip has lived in the Greater Boston area for more than a decade and currently resides in Cambridge with his wife, Catherine. Catherine suffers from mitochondrial disease, and Philip became involved with MitoAction following her diagnosis. Catherine and Philip have a vizsla named Rummy, who brings them lots of joy (but sometimes chews their furniture and shoes).
Theresa Couture, Chairperson Emerita
Theresa Couture is a founding member of MitoAction. Theresa, as well as her mother, sister, two children (Brett and Brianna), and niece (Alexandra) all struggle with mitochondrial disease. The vision for MitoAction came about because of the need and desire to improve the lives of patients and families affected by Mito in tangible, concrete ways. Theresa and her son Brett collaborated with the personnel from Tufts Medical Center Metabolism Clinic and other groups around the state. Convinced it could be different, that it had to be different, they opened a dialogue that in turn became a gathering of interested parties, which has grown into MitoAction.
Brett has completed his undergraduate studies from Rochester Institute of Technology in New York and is now a Masters candidate in web development with a focus on user- centered design at the same school. Brianna is a sophomore at Syracuse University’s prestigious S.I. Newhouse School of Public Communications, majoring in broadcast journalism. Despite the daily medical and advocacy challenges of college level work, they both strive to live a full rich life, blazing trails along the way. Their resilience is inspirational. Theresa holds a Bachelors of Science and worked as an ICU trauma nurse. The onset of more serious mitochondrial disease complications made working in that capacity impossible. Currently she designs jewelry for Prajna Jewelry Design. These days Theresa has taken a less active role in MitoAction’s daily functioning but she remains up-to-date on the correspondences, projects and programs being developed. She feels MitoAction has done an amazing job filling the needs of the mitochondrial disease community by staying very true to its original mission statement. Theresa hopes to be back in MitoAction trenches in the near future.
Kirsten Jo Casale, Chairperson for Education and Advocacy
Kirsten Casale is a mother of two young adults with mitochondrial disease. She has been an at-home mom for 22 years, and has been advocating for children for the past 18 years. Over the past five years she has established and written the education and advocacy section for MitoAction’s website. Her desire to ease the tensions that often occur between school systems and families is what motivates her to continue to develop tools and materials that will properly support a child with Mito who is either attending school full or part time or being home schooled. In 2007, Kirsten petitioned the state of Rhode Island to recognize “Mitochondrial Disease Awareness Week.” Then-Governor Donald L. Carcieri declared as a gubernatorial proclamation that “Mitochondrial Disease Awareness Week” would be recognized for the first time in Rhode Island. Prior to joining MitoAction, Kirsten taught, volunteered, and supported special education programs, and managed a law firm and a dental firm. She holds her dental assisting certificate and has worked as a licensed Emergency Medical Technician. As an avid advocate for educational success for Mito children, Kirsten attends Board of Regents hearings, teleconferences in order to advocate and support the needs of children with Mito during school IEP//504 meetings, attends special education support groups and conferences nationally to better understand what has to be conveyed so that all children with mitochondrial disease will have proper access and accommodations/modifications to academic curriculum's that will allow children with mitochondrial disease to succeed educationally.
Susan Reard
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Sue is the mother of two beautiful girls. Her youngest daughter Lauryn was diagnosed with Complex I mitochondrial disease at the age of 2, and Sue quickly realized how much time, effort, and emotion is involved with doctor appointments, therapy sessions, school meetings, and other commitments that are required for a child with a disability. She has worked for nearly 20 years for her family business, QTAS, Inc., and was fortunate to have flexibility and family support while raising her children. Always one to give back, Sue has been volunteering for MitoAction for over three years, and has taken on major responsibilities, including managing the registration team at the annual walk. She is an active member of her community, and currently serves on the board of directors for the Hingham Special Education Parent Advisory Committee (SEPAC). In the past, she served on the board for the Hingham Mother's Club, as well as the Yellow Brick Road Project, which has helped battered women get computer training in order to enter the workforce. With her boundless energy and positive outlook, Sue is dedicated to providing much-needed support for mitochondrial disease patients and families.
Medical Advisory Committee
Dr. Katherine B. Sims, MD, CHAIR
Dr. Katherine Sims serves as the Director of the Neurogenetics and Mitochondrial Disorders Clinic at the Massachusetts General Hospital. She also oversees the MGH Mitochondrial Disorders Clinical Registry and BioRepository located in the Center for Human Genetics Research (CHGR) at MGH. She works in research collaboration with Dr. Vamsi Mootha (Broad Institute and CHGR/MGH) toward better genetic and pathobiologic understanding of the energy metabolism/mitochondrial disorders. She received her medical degree from Columbia University College of Physicians and Surgeons and is board-certified in Psychiatry and Neurology with Special Competence in Child Neurology. Dr. Sims is Professor of Neurology at the Harvard Medical School.
Margaret Klehm, Secretary, Medical Advisory Board Member
Margaret R. Klehm, R.N., M.P.H., M.S.N., C.P.N.P. is a nurse practitioner in the metabolic program at Tufts Medical Center in Boston, MA. She has worked with patients with metabolic and mitochondrial disease since 1991 at both Children's Hospital and Tufts-New England Medical Center. Prior to that she was a nurse manager on the Bone Marrow Transplant Unit at Brigham and Women's Hospital. She has also worked as a staff nurse on the oncology and bone marrow transplant unit at Children's Hospital in Boston. Margaret graduated from New England Deaconess School of Nursing and the University of Massachusetts in Amherst. In addition she has a Masters in Public Health from Boston University and a Masters of Science in Nursing from Simmons College.
Dr. Irina M. Anselm, MD
Dr. Irina M. Anselm is a staff neurologist at Children’s’ Hospital Boston and is an assistant professor at Harvard Medical School. She specializes in general neurology, mitochondrial and neurometabolic disorders. She is board certified in pediatrics and neurology/child neurology. Dr. Anselm received her degree from St Petersburg Pediatric Medical Academy in Russia and did her pediatric residency at the University of Massachusetts Medical Center in Worcester. She did her neurology fellowship at Tufts New England Medical Center.
Dr. David Holtzman, MD, PhD
Dr. David Holtzman works in Pediatric Neurology at Massachusetts General Hospital for Chidren. He is board-certified in Pediatrics and Neurology. He is an associate professor in neurology at HMS. He graduated from the University of Chicago Medical School and served his residencies in Pediatrics and Child Neurology at Bronx Municipal Hospital Center and at Albert Einstein College of Medicine in New York. He was Head of Pediatric Neurology at Stanford University and Tulane University.
Dr. Mark Korson, MD
Dr. Korson received his medical degree from the University of Toronto, graduating in 1982. He completed his pediatric training at The Hospital for Sick Children in 1986; this was followed by a genetics and metabolism fellowship at Children's Hospital, Boston (1986-1990). He served as Director of the Inborn Errors of Metabolism Service at Boston Children's Hospital from 1990-2000, and is currently Chief of the Metabolic Service at Boston's Floating Hospital for Children at Tufts Medical Center. He is also associate professor of pediatrics at Tufts University School of Medicine.
Dr. Korson's clinical interests include the management of inherited metabolic disorders (including enzyme replacement and transplantation), the development of teaching methods for training physicians, residents, medical students and community professionals about genetic metabolic diseases, and the development of mechanisms for the long-distance management of patients with these disorders. Dr. Korson has been co-director of the North American Metabolic Academy (NAMA), sponsored by the Society for Inherited Metabolic Diseases (SIMD), since its inception in 2007, and founder and director of the Metabolic Outreach Service since 2007.
Margaret Orr, MSN EdM FNP-BC
Maggie Orr is the nurse coordinator in the Metabolism Service at Floating Hospital for Children at Tufts Medical Center. She trained as a Family Nurse Practitioner at Yale School of Nursing and worked in primary care for adults and children prior to staying home to care for her daughter, Mamie Rose, who died of mitochondrial disease in 2003. She has undergraduate degrees in Spanish and Early Childhood Education from Arizona State University, and a master's in education from Harvard Graduate School of Education.
Dr. Alex Flores, MD
Dr. Alex Flores is Chief of Pediatric Gastroenterology and Nutrition at Floating Hospital for Children at Tufts Medical Center, Director of the Pediatric Neurodigestive Center at the Floating Hospital for Children, Tufts Medical Center, and Clinical Professor of Pediatrics at Tufts University School of Medicine. He is a graduate of the Universidad de San Carlos de Guatemala School of Medical Sciences, and received graduate training at Baylor College of Medicine, Children’s Hospital Boston/Harvard Medical School, Duke University Medical Center, Hospital Militar, Jacaltenango Hospital, Roosevelt Hospital in Guatemala, and the World Health Organization-UNICEF. Dr. Flores is board-certified in Pediatric Gastroenterology and Pediatrics and works closely with Dr. Mark Korson to support metabolic and mitochondrial patients with GI dysfunction. In addition to developing innovative laparoscopic technique for enteral support, Dr. Flores’ specialities include GI motility disorders and general pediatric gastroenterology.
Dr. Patricia O'Malley, MD
Dr. Patricia O'Malley has trained in pediatrics, pediatric critical care, emergency medicine and palliative care at Massachusetts General Hospital and Children's Hospital Boston. She has served as the director of the Pediatric ED at MGH for 25 years and is also the director of the Pediatric Palliative Care Team. Dr. O'Malley has worked as part of the coordinated care team for several mitochondrial disease patients.
Dr. Frances Kendall, MD
Dr. Frances Dougherty Kendall trained and served on the staff at Boston Children's Hospital and Harvard Medical School for a number of years. She was the previous 50% owner of a successful genetic laboratory/healthcare provider (Horizon Molecular Medicine), and has extensive experience in the diagnosis and management of children with a wide array of metabolic disorders. She brings this vast experience to her private practice, Virtual Medical Practice, LCC, as president and founder. Dr. Kendall is a well respected pediatrician as well as biochemical geneticist, and she has authored numerous research articles on rare diseases ranging from Nieman Pick Type C and mitochondrial disease. As one of the few clinical mitochondrial disease experts, she has a long-term interest in research and clinical aspects of rare metabolic diseases.