Medical Advisory Board
Amel Karaa, MD obtained an international Baccalaureate from the Franzoesisches Gymnasium with a major in Biology and Chemistry in Berlin, Germany.
Dr. Karaa completing her doctoral training at la Faculte de Medicine et de Pharmacie de Tunis, in Tunisia. She spent 3 years in the laboratory of Dr. Mark Clemens at the University of North Carolina at Charlotte where she worked on liver microcirculation regulation under oxidative stress from which she has several publications. Dr. Karaa completed a residency in internal medicine at Mount Auburn Hospital, Harvard and a fellowship in clinical genetics through the Harvard Medical school combined program.
During her career, Dr. Karaa has always been intrigued by rare multi-systemic disorders and has tried to acquire a multidisciplinary training in basic research, clinical research, and medical service that uniquely shaped her to be a competent physician scientist. She is now double board certified in internal medicine and clinical genetics and leading the lysosomal storage disorder and adult mitochondrial clinics at the Massachusetts General hospital in Boston. She has received the 2013 United Mitochondrial Disease Foundation (UMDF) fellowship and is conducting clinical research for both mitochondrial and lysosomal storage diseases as well as clinical trials.
Dr. Karaa is committed to being an advocate for her rare disease patients and to educate adult providers in recognizing and treating complex patients who are often discounted as having somatization disorders and factitious symptoms.
RNE Board of Directors
Lois M. Foster, LICSW, is a clinician in private practice in Attleboro, Ma. She received her MSW degree from Boston University.
Prior to establishing her practice, Lois had a 25 year career in the non-profit sector, formerly the Director of Big Brothers, Big Sisters of Greater Attleboro. Her professional interests include: clinical social work, program development and grant writing, special education and medical advocacy. In addition, Lois has provided supervision and consultation services to community non-profits.
Lois is the past recipient of the Big Brothers Big Sisters, Distinguished Leadership Award and the Attleboro Council for Children’s Champion for Children’s Award. Lois has severed on the Department of Children and Families, and Triboro Youth Theatre Board of Directors.
Currently she serves on the Attleboro Council for Children and Rare New England, Board of Directors. Lois can be reached at Lois@rarenewengland.org
Julie Gortze, RN founded what was previously known as Mito New England, in 2013 to allow patients and families find connections and emotional support among those with similar complicated medical problems. She strongly believes in empowering patients with information relevant to their medical issues through educational opportunities, enabling potential for improved quality of lives.
Realizing many rare and complex disorder communities must overcome societal obstacles to obtain proper medical care and resources, Julie has been advocating for the broader rare and complex disorder community.
She has worked as an RN in pediatric home care, sub acute care, and acute care. She has volunteered in several patient advocacy organizations, including MitoAction, United Mitochondrial Disease Foundation and National Organization for Rare Disorders. Julie has been on the planning committee for Rare Disease Day State House events in MA since 2015, volunteers on the Genetics Conference Planning Committee with New England Regional Genetics Group (NERGG), and is on the Steering Committee for the New England Regional Genetics Network (NERGN).. Julie collaborates with Mito Hope and Help, in NY, and has volunteered on their Symposium Planning Committee. Julie was involved in the creation of a rare disease advisory council initiative in CT and has championed a similar bill called An Act to Create an Advisory Council for Rare Diseases MA that is still in play.
Julie has personal experience with a complex disease and has learned first-hand what patients and families must deal with while searching for a cause for symptoms. As a nurse, she also understands that the average medical personnel does not have the familiarity for recognizing, diagnosing and treating a complex medical disorder. She recognizes a need for bridging the gap for patients and families between the busy clinics and available resources to enable more beneficial continuing of care and improved quality of lives.
Julie has four grown children, loves to spend time with her precious dogs, and walk by the ocean - preferably both at the same time.
Julie can be reached at Julie@rarenewengland.org
Secretary
Founder/President
Mark Korson, MD graduated from the University of Toronto School of Medicine (1982), completing a rotating internship at St. Joseph’s Health Center in Toronto (1983) and his pediatric residency nearby at The Hospital for Sick Children (1986). After completing a fellowship in genetics and metabolism at Boston’s Children's Hospital (1990), he became director of the Inborn Errors of Metabolism Clinic at Children's until 2000. In 2000, Dr. Korson became director of the Metabolism Service at Tufts Medical Center's Floating Hospital for Children, as well as Associate Professor of Pediatrics at Tufts University School of Medicine, serving there until 2014.
Dr. Korson promotes an educational approach to address the growing crisis in metabolic health care due to the shortage of available clinicians to treat this patient community. In 2007, Dr. Korson co-founded the North American Metabolic Academy, an annual one-week intensive course about metabolic disease for genetic and metabolic trainees; to date, more than half of all American genetic trainees have enrolled in this course. NAMA is sponsored by the Society for Inherited Metabolic Disorders (SIMD).
Between 2007 and 2011, Dr. Korson founded and directed the Metabolic Outreach Service, based at Tufts Medical Center, for which he traveled on a regular basis to five teaching hospitals in the northeastern US without an on-site metabolic service. In 2015, Dr. Korson co-founded the Genetic Metabolic Center for Education (GMCE), a comprehensive, multi-modal initiative for improving the level of care for children and adults with metabolic disease. In October 2017, Dr. Korson joined VMP Genetics in Atlanta as Director of Physician Support to promote telehealth metabolic consulting, assisting physicians in the care of their metabolic patients. Also, as VMP Director of Education, he continues to develop innovative resources to help educate specialists and their trainees so they can participate more in the diagnosis and management of metabolic disease.
Richard Barnum, MD is a child and adolescent forensic psychiatrist.
He directed the Boston Juvenile Court Clinic from 1982 to 2003, conducting evaluations of thousands of children and families involved in juvenile court. He was formerly on the faculty of the University of Massachusetts and Harvard Medical Schools, and has written on issues of forensic assessment of children and families and mental health concerns in the juvenile justice system.
Since 2003, he has been in the private practice of psychiatry, providing consultation and treatment for children and families in community and residential settings. This work has included increasing involvement with children suffering from various hard-to-diagnose medical conditions, including writing and teaching on interactions between physical and psychological processes.
RNE Medical Advisory Board members have made valuable contributions in service to the rare and complex community and have proved commitment and eagerness for assisting patients and families through their medical odysseys.
Each member of the RNE Board of Directors is dedicated to improving the coordination of care and improving quality of life for patients and families affected by
rare and complex medical conditions.
Janet D. Silva, MSF, obtained a Master of Science in Finance from New England College of Business and Finance. She is an Assistant Trust Officer in the Financial Advisory Services Division of Bristol County Savings Bank where she has worked for over 20 years.
Prior to returning to school in 2011, Janet was the Treasurer for a local Cub Scout Pack and was on the Activities Committee for the Anawan Council of the Boys Scouts of America. She has also been a member of an Interagency Committee in Massachusetts which focused on the transportation needs of children and families with special needs. Janet can be contacted at Janet@rarenewengland.org
Treasurer
Director
RNE Committee Members
Debra McEleney is currently the Administrative Manager for The Sheridan Center for Teaching and Learning at Brown University. Debra has worked for New Hope and Big Brothers Big Sisters of Attleboro. A recent empty nester, Debra plans to utilize her time and professional skills to assist local non-profit organizations with outreach and fundraising activities. Debra is a loyal NE Patriots fan. She and her husband currently live in Taunton Massachusetts.
Lisa Louise Brailey, MD, DABMGG
Dr. Brailey obtained her undergraduate degree in biology from Harvard University and her medical degree from the University of Connecticut. She completed residency and fellowship training in genetics at Yale University and is board-certified in clinical genetics, cytogenetics, and molecular genetics. She has served as Associate Director of Cytogenetics at Ameripath Northeast (Quest Diagnostics) and as Technical Director of Molecular Diagnostics and Clinical Trials at Dianon Systems (Laboratory Corporation of America), both in Shelton, CT. She currently serves on the boards of directors of the Naugatuck Valley Health District and the New England Regional Genetics Group and is adjunct faculty at the University of New Haven. Her interests include DNA sequencing and data analysis, genetics education and outreach, and metabolic disease. She and her husband, Bob, reside in Derby, CT, where she enjoys hiking, swimming, playing the violin, reading, and promoting community engagement.
Allison Wood is a graduate of the University of Vermont with a bachelor’s degree in Animal Science. She has spent the last nine years working in the dairy industry for a bovine genetics cooperative.
After her son, Isaac, was born she learned that he had a rare disease called Glutaric Acidemia Type 1. This was found through newborn screening. She is happy to say that because of newborn screening and aggressive treatment he shows very few symptoms of the disease. After coming to grips with his diagnosis of this very rare disease Allison wanted to be a part of advocating to help address issues that her family has faced. She is a part of the Organic Acidemia Association and also a consumer task force member for Baby’s First Test.
Allison and her husband have one other child, Maryanne and live in Fair Haven, Vermont.
Jeantine Lunshof RN, PhD is a philosopher and bioethicist and is Assistant Professor at the Department of Genetics, University Medical Center Groningen, The Netherlands. Next to her studies of Philosophy and Health Law at the University of Amsterdam, Jeantine trained as a nurse in a hospital-based nursing school and upon receiving her RN she worked for almost 10 years in the research clinic of the Netherlands Cancer Institute in Amsterdam.
From 1988 till 1996 she has been Ethics Consultant to the Dutch umbrella organization of patients and families concerned with congenetical and hereditary disorders (VSOP). After holding a prestigious Marie Curie Fellowship from 2013 till 2016, Jeantine currently works at the University of Groningen and at Harvard Medical School, Department of Genetics, Church lab, where she pursues a research program on systems biology-based concepts of health and disease and on normative models for genomic sciences and biological engineering.
In 2006, she developed the innovative model of Open Consent that forms the normative backbone of the Personal Genome Project, for which she is the Ethics Consultant. Jeantine has been Ethics Advisory Board Member for two large European Commission-funded research consortia, she is Affiliate Member of the NIH Pharmacogenomics Research Network, and she serves on a number of editorial boards.
Past RNE Board Members
Lisa Deck is a married mother of two living in North Attleboro, MA. She is a longtime volunteer & advocate for the American Heart Association and served as a Go Red for Women National Spokeswomen 2014 - 2015.
Lisa is an active member of her community and volunteers with the public schools, Girl Scouts and local organizations. She is the founder of Sisters@Heart, Inc., a non-profit dedicated to improving the lives of heart and stroke patients and their families.
She is also a blogger and motivational speaker at ISurvivor Lisa Deck (www.lisadeck.com), sharing her personal story of overcoming four strokes, a rare brain disease and two brain bypass surgeries.
Since being diagnosed with Moyamoya disease in 2015, Lisa has become a passionate advocate for rare disease issues. She has lobbied at the local, state and Federal level for positive change for rare patients.
Lisa has been a valued volunteer with Rare New England for 2 years and has now made the commitment to serve rare disease patients through the RNE Committee.
Lisa can be Rea chef at Lisa@rarenewengland.org
Amel Karaa, MD obtained an international Baccalaureate from the Franzoesisches Gymnasium with a major in Biology and Chemistry in Berlin, Germany.
Dr. Karaa completing her doctoral training at la Faculte de Medicine et de Pharmacie de Tunis, in Tunisia. She spent 3 years in the laboratory of Dr. Mark Clemens at the University of North Carolina at Charlotte where she worked on liver microcirculation regulation under oxidative stress from which she has several publications. Dr. Karaa completed a residency in internal medicine at Mount Auburn Hospital, Harvard and a fellowship in clinical genetics through the Harvard Medical school combined program.
During her career, Dr. Karaa has always been intrigued by rare multi-systemic disorders and has tried to acquire a multidisciplinary training in basic research, clinical research, and medical service that uniquely shaped her to be a competent physician scientist. She is now double board certified in internal medicine and clinical genetics and leading the lysosomal storage disorder and adult mitochondrial clinics at the Massachusetts General hospital in Boston. She has received the 2013 United Mitochondrial Disease Foundation (UMDF) fellowship and is conducting clinical research for both mitochondrial and lysosomal storage diseases as well as clinical trials.
Dr. Karaa is committed to being an advocate for her rare disease patients and to educate adult providers in recognizing and treating complex patients who are often discounted as having somatization disorders and factitious symptoms.
Dr. Karaa continues her connection with RNE through the Medicalm Advisory Board.
Jessica Shriver, MA Theology, MS Bioethics is a patient advocate and bioethicist specializing in care and advocacy issues that impact rare disease patients and their families.
Jessica earned a B.A. in Biochemistry at Smith College in Massachusetts, and worked for three years in biomedical research, studying effects of exercise on human and mouse muscle reconstruction. Jessica attended seminary at Gordon-Conwell Theological Seminary in Hamilton-Wenham, Massachusetts, where she received a Master of Arts in Theology. Jessica earned a Master of Science in Bioethics from Albany Medical College, where her research focused on false accusations of medical child abuse.
In addition to her work with RNE, Jessica works as a patient advocate consultant, and has worked with the national non-profit organization MitoAction in their Advocacy Task Force, and Grief Support group. Jessica also works with the Rhode Island-based Anglican Church of the Way, in their Special Needs Ministry. Her research interests include ethical issues in the Rare Diseases community, the ethics of pediatric medical decision-making, false medical child abuse accusations, and pediatric palliative and end-of-life care.
Jessica’s life was impacted by rare disease when her husband and two children were diagnosed with a combination of rare genetic disorders, and her oldest child died of progressive medical problems at age five.
Tasia Rechisky is a Boston University graduate and longtime rare disease advocate. At six months old, she was diagnosed with a rare metabolic disorder, Very Long Chain Acyl Coa Dehydrogenase Deficiency (VLCADD). She has joined Rare New England (RNE) as a committee member after several years of participating as a patient speaker for their Rare Disease Day Speakers series. In addition to her activities with RNE, she is an active member of the broader rare disease community speaking at several universities on the impact of living with a rare disease, working with pharmaceutical companies to improve resources for patients and their families and speaking on behalf of rare disease legislation. She is a creative writer and is also contributor of the Mighty on rare and chronic illness. She currently lives in Malden, MA and works in research & development. In her free time, you can find her traveling, exploring the outdoors, reading and volunteering in the community. She is a long-time volunteer for the Girl Scouts and Little Brothers Friends of the Elderly.
She looks forward to continuing to bring awareness to rare disease and believes when organized together the potential of this community is boundless.
Michael Middlebrook is an Associate at Advent International, a global private equity fund, based out of Boston, that focuses on buyouts of large companies throughout North America, Europe, Latin America, and Asia. Michael is focused on making investments in the healthcare space, with a particular focus US pharmaceutical companies, pharmacies, post-acute care facilities and retail healthcare. Prior to Advent, Michael was a management consultant at Bain and Company, where he focused on private equity due diligences, and consulted for large pharmaceutical companies and health insurers.
Michael graduated cum laude from Yale University, with a BA in Economics (with distinction). In his free time, Michael skis, indoor bikes and plays tennis.
John C. Campbell, BS has 25 years industry experience with 15 years in the pharmaceutical and 10 years in biopharmaceutical business. In 1992 he joined SmithKline Beecham (SB) doing mammalian cell culture and fermentation process development. In 1998 he transferred to Global Clinical Development & Medical Affairs at SmithKline working on the clinical development of Avandia® for Type 2 Diabetes. At SB he led the Avandia® and Avandamet® Investigator Study Program and provided medical promotional preview and publication/lifecycle management for the Avandia® family of products while continuing to work on clinical development R&D projects in diabetes and metabolism.
In 2005 he joined Endo Pharmaceuticals as Associate Director of Medical Affairs serving as Medical Lead for Frova® and played a key role in the acquisition of Indevus Pharmaceuticals helping to establish new capabilities in pediatric endocrinology, urology and urologic oncology. At Endo John worked in a number of therapeutic areas and had responsibility as Medical Lead for Valstar® (bladder cancer), Vantas® (prostate cancer), Frova® (migraine), and Supprelin LA® (Central Precocious Puberty). He also worked in clinical development for a number of opioid and non-opioid pain management compounds. John left Endo in 2012 as Director, Medical Affairs and established Med Affairs Alliance Partners, LLC (MAAP) a consulting business serving various clients in the US, Toronto and Copenhagen.
In 2014 he joined Stealth Biotherapeutics as Senior Director, Clinical Development & Medical Affairs where he led the Mitochondrial Myopathy clinical development program and developed an expertise in the clinical and regulatory development of rare & orphan drugs. At Stealth he established a new group called Regulatory & Clinical Outcome Sciences focusing on incorporating functional clinical outcomes and the patient perspective in the clinical development of Bendavia for Mitochondrial Myopathy.
In 2016 John returned to consulting supporting clients with compounds targeting rare & complex disorders in various stages of pre-clinical and clinical development. John also works with the Genetic Metabolic Center for Education (GMCE) supporting the development of a novel approach to medical education in metabolic and genetic disease. John continues to work with a number of Patient Advocacy Organizations and lives with his family in Pottsgrove, PA.
