Lipedema Think Tank 2015
A revolutionary approach to healthcare, the Think Tank is a body of experts providing advice and direction on a specific issue or problem. Under the direction of Mark L. Smith, MD, FACS, the Lipedema Think Tank 2015 was an opportunity for clinicians, researchers and patient advocates across many disciplines to come together to share knowledge, brainstorm, and develop a research agenda to advance our understanding of lipedema and move towards a cure.
The idea of the Think Tank for lipedema was first conceived in conversations between Professor Etelka Földi, MD, Mark L. Smith, MD, FACS, and Catherine Seo, PhD in Hinterzarten, Germany. In looking to answer the question on finding a cure for lipedema, Prof. Földi, the world’s top expert in lymphology, stated “invite the experts across many disciplines to come together and discuss the pieces of a very complex puzzle – that’s lipedema.”
The first Think Tank on Lipedema was held as part of the First International Symposium on Lipedema on April 18, 2015 in NYC sponsored by The Friedman Center for Lymphedema Research & Treatment at Mount Sinai Beth Israel. Our goal was met. We established a network of research-oriented individuals who could collaborate to achieve progress in curing lipedema. Many research projects and various initiatives formed by participants are now underway.
Lipedema Think Tank 2015 Participants
Jeanine Albu, MD
Dr. Jeanine Albu is an endocrinologist in New York, NY. She received her medical degree from Tel Aviv University Sackler and is affiliated with Mount Sinai Beth Israel, Mount Sinai St Lukes Hospital, and New York Presbyterian Hospital Columbia University Medical Center. Dr. Albu has been in practice for 33 years and specializes in diabetes and metabolism.
In 2013, Polly learned that she had lipedema, a discovery that eventually led her Germany, where she underwent WAL liposuction with Dr. Josef Stutz. Polly is now Executive Assistant of Stutz Lipedema Services LLC, where she collaborates with Dr Stutz reviewing English-language literature, translating and editing his work, and carrying out statistical data analyses. She also facilitates his work in the States, and serves as liaison to his American patients.
Sarah is a lipedema and lymphedema patient who combines her experiences as a patient and healthcare administrative professional in her advocacy efforts. She writes about her life experiences on her blog, born2lbfat.com, and utilizes multiple social media platforms to spread awareness about her conditions and to advocate for improved diagnosis, treatment, and insurance coverage. She also advocates against weight bias and stigma, specifically in healthcare and the workplace.
Donald W. Buck II
Dr. Donald W. Buck II is a Board Certified Plastic and Reconstructive Surgeon and Assistant Professor at the Washington University School of Medicine in St. Louis, Missouri. Dr. Buck specializes in all aspects of Plastic and Reconstructive Surgery including complex microsurgical reconstruction, the surgical treatment of lymphedema and lipedema, and cosmetic surgery of the face, breast, and body.
Christoph Buettner, MD, PhD
Dr. Christoph Buettner is an endocrinologist in New York, NY and is affiliated with Mount Sinai Hospital. He received his medical degree from Ludwig Maximilian University of Munich Faculty of Medicine and has been in practice for 19 years. Dr. Buettner is one of 66 doctors at Mount Sinai Hospital who specialize in Endocrinology, Diabetes & Metabolism.
Matthew Carmody, MD
Dr. Matthew Carmody is an internist in Cambridge, MA and is affiliated with Mount Auburn Hospital. He received his medical degree from Boston University School of Medicine and has been in practice for 36 years. He is one of 183 doctors at Mount Auburn Hospital who specialize in Internal Medicine.
Felicitie Daftuar, MBA
Felicitie is Founder and Executive Director of the Lipedema Foundation and past President of the Fat Disorders Research Society (FDRS). Felicitie had lipedema symptoms occur at 4 weeks postpartum after her second child was born and has successfully managed the lipedema symptoms through only nutritious eating, exercise, caffeine and natural hormonal fluctuations.
Jens Diedrichson, MD
Dr. Jens Diedrichson is a consultant plastic surgeon in the Department of Plastic and Aesthetic Surgery at Florence-Nottingale Hospital in Düsseldorf, Germany. He also has a private practice in Düsseldorf. Dr. Diedrichson is on the German Board of Plastic and Aesthetic Surgery and the European Board of Plastic Reconstructive and Aesthetic Surgery.
The Lymphedema Treatment Act was started by Heather Ferguson of North Carolina, whose son has lymphatic issues. If passed, it would improve coverage for lymphedema treatment for those on Medicare, and most private insurers would likely change their rules to match. While lipedema is not lymphedema, many patients have both and will benefit if insurers offer better access to preventive treatments.
Etelka Földi, PhD, MD
Professor Földi and her husband founded the Földi Clinic as a specialist clinic for lymphology in April 1979 in Feldberg-Altglashütten. She received CHI authorization for lymphological consultation, so that out-patient lymphedema treatment could be performed in addition to in-patient treatment. She also established Complex Physical Decongestive Therapy (CDT) at the clinic, which is now recognized as the basis for conservative lymphedema treatment, embedded in an internistic integral concept.
Harriet Forman, EdD, RN
Harriet Forman graduated from the Mt. Sinai Hospital School of Nursing and earned her EdD from Teachers College, Columbia University. Having always dreamt of being a nurse and an author, she wove her two loves into one career, launching and remaining its Executive Director for eleven years. She retired from that position in 2001. Harriet is widely published and experienced in patient centered care, management/leadership development, labor relations, organizational development and redesign, & conflict resolution. She is now an independent healthcare consultant.
Kathleen Francis, MD
Dr. Francis has a private practice, Lymphedema Physician Services, PC, in Livingston, NJ, which specializes in evaluation and management of lymphedema, chronic venous edema, and other forms of edema. She also serves as Medical Director of the St. Barnabas Lymphedema Treatment Center. Dr. Francis is a member of the National Lymphedema Network Medical Advisory Board, and is Medical Director of Klose Training and Consulting, a training course for lymphedema therapists.
Susan Fried, PhD
Professor Fried specializes in obesity and adipose tissue biology. She holds a PhD in nutritional biochemistry from Columbia University. She is Professor at the Department of Medicine, Division of Endocrinology, Diabetes and Bones Diseases. She is also Director of Translational Adipose Biology and Obesity at the Diabetes, Obesity and Metabolism Institute at the Icahn School of Medicine at Mount Sinai. She formerly was the Director of the Boston Nutrition and Obesity Research Center, the director of Adipose Biology and Nutrient Metabolism Core, and the director of the Affinity Research Collaborative on “Sex differences in Adipose Tissue and Obesity-related metabolic diseases”.
Kimberly Gudzune, MD, MPH
Dr. Gudzune is board-certified in Internal Medicine and a diplomat of the American Board of Obesity Medicine. She is an Assistant Professor in the Division of General Internal Medicine in the Department of Medicine at Johns Hopkins University, in addition to being a member of the Core Faculty of the Welch Center for Prevention, Epidemiology, and Clinical Research. Her research focuses on the impact of obesity on the patient-physician relationship and how factors in the physical and social environments influence body weight.
Donna Haynes is employed at the Legal Aid Society of the Orange County Bar Association, Inc. She brings in surplus funding to ensure the stability of the nonprofit program. Changing lives every day through the use of the legal system is another goal of hers that has resulted from this development position.
Falk-Christian Heck, MD
Dr. Falk-Christian Heck has been working as an accident, orthopedic, and plastic surgeon for about 24 years. In 2013, he opened the department for Lipedema-Surgery in Essen, Germany. His research interests are settings for mega-liposuctions: equipment, anesthesia, and medication, surgical techniques in the anatomical areas of interest, pre-and postoperative management, matching of patients, and establishment of “state of the art”.
Robert Heinzman’s expertise is in change leadership. As a partner at Growth River, he leads the Global Science Practice, working with a wide array of .com, .org and .edu organizations to advance their ability to create a future in which we all want to live. He holds a degree in Geochemistry from the University of Colorado and a Masters from Yale School of Forestry and Environmental Studies.
Karen Herbst, PhD, MD
Dr. Herbst is a board-certified endocrinologist and Associate Professor and Director of the Endocrine Fellowship program in the Department of Medicine at the University of Arizona and Banner Medical Center. She has been working in the area of fat disorders since 2003, and currently has two clinics dedicated to patients with these disorders. She has treated hundreds of women with lipedema and is currently training future endocrinologists to recognize and treat fat disorders.
Cheri Hoskins, CLT, CCT
Cheri is the President and CEO of Compression Done Right, Inc., a consulting company for compression therapy. She has over 30 years of experience specializing in lymphatic, vascular, and arterial Compression Therapy. For 27 years prior to heading Compression Done Right, Cheri owned clinics across the United States, treating patients suffering from conditions requiring compression therapy. She has evaluated all products and devices available for such treatment.
Guenter Klose, MLD/CDT
Guenter Klose was instrumental in establishing the first lymphedema treatment centers and certification courses in the United States. His company, Klose Training, provides the highest-quality MLD/CDT education to many hundreds of therapists in the U.S. and Internationally. His most recent innovation is the development of advanced online courses.
Gwen Randolph, PhD
Gwen Randolph is currently Professor of Immunobiology in the Department of Pathology and Immunology at Washington University in St. Louis. Her laboratory studies are on monocytes, macrophages, and dendritic cells in the context of vascular and lymphatic biology, with a long-standing emphasis on the disease atherosclerosis and an emergent interest in Crohn’s disease.
Stefan Rapprich, MD
Dr. Rapprich is a Partner at Hautmedizin Bad Soden in Taunus, Germany. He was a physician in the Department of Dermatology at Klinikum Darmstadt from 1992 to 1997, and then senior physician there from 1997 to 2014. His specialties include liposuction, dermatologic surgery, and phlebologic surgery.
William Repicci is President & CEO of the Lymphatic Education & Research Network (LE&RN) dedicated to fighting lymphatic disease and lymphedema through education, research, and advocacy. One of LE&RN’s signature programs is the awarding of research fellowships. Beginning in 2015, LE&RN formed a partnership with Fat Disorder Research Society (FDRS) to establish postdoctoral fellowships focused on lipedema research.
Stanley Rockson, MD
Stanley G. Rockson MD is the Allan and Tina Neill Professor of Lymphatic Research and Medicine and Stanford University and directs the Stanford Center for Lymphatic and Venous Disorders, where he conducts basic and clinical research in lymphatic disorders, including lipedema. He is the Founding Chair of the LE&RN Scientific and Medical Advisory Committee. Dr. Rockson has authored more than 150 scientific papers, reviews, book chapters, and books devoted to various aspects of lymphatic biology and disease, vascular biology, and cardiovascular medicine.
Catherine Seo, PhD
Catherine Seo founded Lipedema Simplified, LLC in 2012. She is Co-Director of The Lipedema Project, and the director and producer of the documentary, The Disease They Call FAT. When confronted with almost certain immobility and complications from misdiagnosed lipedema, she traveled the world interviewing other patients, doctors, surgeons and experts looking for answers. The documentary is this story. She has been dedicated to raising awareness both for women who have or might have lipedema and for providers in the healthcare sector.
Tilly Smidt started to spread lipedema awareness throughout the world with her website, http://www.tillysmidt.nl/. She is also Founder of the Dutch (National) Lipoedema Association (LIPV). After struggling with her body weight and pain since the age of 11, Tilly found out in November 2003 that she has Lipedema. Tilly was glad to have a name for her disease, but angry at all those doctors who failed to diagnosed her for more than 40 years.
Mark L. Smith, MD, FACS
Dr. Mark L. Smith is System Vice-Chair, Department of Surgery at The Center for Advanced Medicine at Northwell Health System and Director of Reconstructive Oncology at the Northwell Health Cancer Institute. Dr. Smith is also Director of the Friedman Center for Lymphedema Research and Treatment. He is an expert in the field of cancer and lymphatic surgery and is double-fellowship trained in Microsurgery and Craniofacial Surgery. He is also Co-Director of The Lipedema Project and Professor of Clinical Surgery at the Hofstra Northwell School of Medicine.
Jennifer Svahn, MD
Dr. Svahn is a Board Certified Vascular Surgeon and Director of Vein Surgery at Union Square at Northwell Health Physician Partners. She is also Assistant Professor of Surgery at Hofstra Northwell School of Medicine. Her practice is limited to treating all aspects of venous disease, including venous edema, dermatitis, venous ulceration, painful varicose veins, and cosmetic varicose veins. Dr. Svahn is also involved with training medical students and surgical residents and is the author of many peer-reviewed articles and book chapters.
Melody Swartz, PhD
Melody A. Swartz is the William B. Ogden Professor in the Institute of Molecular Engineering at the University of Chicago. Trained as a bioengineer, she uses quantitative approaches in cell biology and physiology, including biotransport and biomechanics, to investigate the role of the lymphatic system in immunity and pathophysiology, particularly in cancer metastasis.
Jane Wigg, RGN, MSc
Jane Wigg has been at the forefront of lymphedema management for over 20 years, starting one of the first lymphedema clinics in the UK, Wolverhampton Lymphoedema Service within Compton Hospice. Jane also began the Lymphoedema Training Academy as a means of providing quality education in MLD and other lymphedema treatments for therapists. Jane works as Clinical Innovations Manager for Haddenham Healthcare and maintains her clinical practice at LymphCare UK.
Christine Wise, BSc in Advanced Nursing Practice
Christine Wise is a Lymphoedema Nurse Specialist at St Georges Hospital in London and has worked in this speciality since 1997. She is also a joint nurse adviser for Lipoedema UK, the UK’s leading charity for lipedema. She is passionate about lipedema and committed to improving the quality of life of women affected by this condition.
About The Lipedema Project
The Lipedema Project was founded in 2014 by Dr. Mark L. Smith, MD, FACS and Catherine Seo, PhD to begin the research and treatment for lipedema, a chronic fat disorder. Lipedema is a disease involving abnormal fat deposition that can result in pain, immobility, and lymphatic disturbances. Lipedema progresses over time often developing lymphedema, a chronic condition called lipolymphedema.
With obesity reaching epidemic proportions and anti-fat bias prevalent in healthcare, it becomes critical that patients are correctly diagnosed, that resources are invested in understanding this disease and how it can be treated, and that patients have the support, knowledge, and options to manage these chronic conditions.
Currently, The Lipedema Project, Inc. is a 501(c)3 non-profit organization devoted to increasing awareness and providing education, research, and treatment for lipedema through online and face-to-face programs and building community.
The lipedema documentary is available for viewing on Facebook, Lipedema – The Disease They Call FAT.
The book is available on Amazon, Lipedema – The Disease They Call FAT: An Overview for Clinicians.