Board of Directors
et 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", has 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 the Mitochondrial Disease Action Committee (MitoAction) as a way to reach and serve this under-recognized medical population. Cristy then accepted the Executive Director position with MitoAction in November of 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
Matty Cowan, Director of Events & Awareness
Executive Committee and Board of Directors
Paul Harty, President
Paul Harty became CEO 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 & placement businesses. He lives in the Boston area with his wife and 4 children. Paul's youngest 2 children are boy and girl twins and his son, Matthew, has Pyruvate Dehydrogenase Defficiency. While searching for answers for his sons disabilities and managing through a long diagnosis process, Paul discovered Mitoaction as a strong support system and way to gain knowledge about Mito disease. Paul became an active member at first and now serves as President to guarantee that other caregivers or patients who are faced with a mito disease 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 6 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, first hand, 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 insure 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 25 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 30 years as troop leader and treasurer for the Medford Service Unit. Recently, Cindy accepted a position on the Board of Directors for Tri-CAP. Cindy's degree in Early Childhood Education has been 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 president of Frost Motors Inc., a Newton, Massachusetts dealership representing the Cadillac franchise. In operation since 1934, Mr. Keery joined the family business upon his graduation from Ithaca College in 1975, with a degree in Communications. Since 1985, Mr. Keery has been the Dealer Principal, and has successfully grown the business, acquiring and selling several dealerships in the process. In 2002, Mr. Keery 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.
Keery is a member and past president of the Rotary Club of Newton, a member of the Vestry 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, Mr. Keery resides in Weston with his wife Laura, where they raised their four children. He enjoys golf and cycling.
Brian Costello
Brian Costello is a co-founder and Chief Executive Officer of Carespace, Inc. Carespace.com is an on-line community and resource provider for family caregivers. Brian has been a high tech executive for the past 15 years. He co-founded and launched his first company at the age of 28. Before Carespace, Brian served as a Vice President at VeriSign, Inc. (NASDAQ:VRSN.) Prior to VeriSign, Brian was an executive at Guardent, Inc. and was a member of the management team that successfully sold the company to VeriSign, Inc. Brian is currently a member of the board of directors of Ayalogic and also serves on the board of advisors of Mazu Networks. Brian and his wife Kim reside in Weston, MA with their three children and are active in a number of charitable organizations. Brian’s middle daughter Meghan has mitochondrial disease.
Theresa Couture, Chairperson Emerita
Theresa Couture is a founding member of MitoAction. Theresa's mother, sister, two children - Brett and Brianna, niece - Alexandra and herself 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 Mitochondrial disease in real tangible concrete ways. She 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 and become more than either could have hoped for, MitoAction.
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 in addition to working on a book about her Mito journey.
Theresa has been involved for 18 years in numerous discussion groups, research projects, and presentations about special needs in general, genetics, and advocacy always with a focus on Mitochondrial disease. Theresa was asked and provided testimony on health care reform to Hilary Clinton and again to Senator Kennedy. Recently, she presented to hundreds of school nurses about the challenges that having Mitochondrial disease can have in the classroom. Brianna and Brett carry on this tradition of advocacy and using their challenges to benefit others.
Susan Harms
Susan Harms Stover is the Director of Advanced Media for Comcast Spotlight in Boston MA. Her primary focus is on interactive advertising products including online, Video on Demand and addressable advertising. In addition to Susan's media experience, she has an extensive background in sponsorship program development and event planning and management. She lives on the North Shore with her huband and two 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.
Kirsten Jo Casale, Chairperson for Education and Advocacy
Kirsten Casale is a mother of two children with mitochondrial disease. She has been an at-home mom for 20 years, and has been advocating for children for the past 16 years. Over the past 3 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 are what motivates her to continue to partake in developing tools and materials which will properly support a child with mito who is either attending school full or part time or being homeschooled. In 2007, Kirsten petitioned the state of Rhode Island to recognize “Mitochondrial Awareness Week”. 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, managed a law firm, dental firm, 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 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 Reardon
Sue is the mother of two beautiful girls, ages 13 and 10. Her youngest daughter Lauryn was diagnosed with Complex I mitochondrial disease at the age of two, and Sue quickly realized the how much time, effort, and emotion is involved with the doctors appointments, therapy session, school meetings, and other committments 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 flexibilty 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 event. She is an active member of her community, and she 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 work force. 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
Medical School; Columbia University College & Physicians
Certification in; Child Neurology
Associate Professor of Neurology, Harvard Medical School
Current Hospital Appointments: Associate Neurologist, Massachusetts General Hospital;
Child Neurology Residency Director, Partners;
Medical Director, Child Neurology, MGH
Director, Developmental Neurogenetics Clinic, MGH
Director, Neurogenetics DNA Diagnostic Lab, MGH
Fellowship/post-graduate training (type & location): Developmental Neuropathology Fellowship, MGH/Shriver Center
Dr. Sims works in research collaboration with Dr. Vamsi Mootha at the Broad Institute toward clinical phenotyping, and metabolic profiling for mitochondrial disorders. Dr. Sims oversees the MGH Mitochondrial Disorders Clinical Registry and Tissue Bank.
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 progam 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 the 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. Ms. Klehm 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
Department/Division of Neurology
Specialties in General Neurology and Mitochondrial Disorders
Assistant in Neurology, Mitochondrial Program
Instructor, Harvard Medical School
Board Certification in Pediatrics, ABPN (Child Neurology)
Medical School, Leingrad Pediatric Medical School, RUSSIA (1984)
Internship Leningrad Pediatric Medical Inst., RUSSIA (07/84 to 06/85)
Residency University of Massachusetts Medical Center, Worcester, MA (1993 to 1995)
Fellowship New England Medical Center, Boston, MA (1995 to 1998)
Dr. David Holtzman, MD, PhD
Department, Pediatric Nuerology
Assistant in Pediatrics, Assistant in Neurology, MGH
Associate Professor in Neurology, HMS
Board Certification in Pediatrics and Pediatric Neurology
Medical School, University of Chicago (1968)
Residency, Bronx Municipal Hospital Center, NY, Pediatrics (1970)
Albert Einstein College of Medicine, NY, Neurology (1973)
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 ia also associate professor of pediatrics at Tufts University School of Medicine.
Dr. Korson's clinical interests include the management of inherited metabolic disorders (incl. 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.
Margaret Orr, RN MSN EdM, Nurse Coordinator
Maggie Orr is the nurse coordinator in the Metabolism Service at the Floating Hospital for Children at Tufts Medical Center. She trained as a Family Nurse Practitioner at Yale School of Nursing and did primary care before staying home to care for her daughter, Mamie Rose, who died of mitochondrial disease (Complex I defect) 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. Flores is Chief of Pediatric Gastroenterology and Nutrition, Floating Hospital for Children at Tufts Medical Center, and an Associate Professor 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 the LAPEG procedure, Dr. Flores’ specialties include GI motility disorders, and general pediatric gastroenterology.
Dr. Patricia O'Malley, MD
Dr. 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 new 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.