The Ehlers-Danlos Society Awards is an annual celebration of individuals who have made an impact and worked for change for those living with and affected by EDS, HSD, and related conditions.
The Ehlers-Danlos Society Awards
THE EHLERS-DANLOS SOCIETY AWARDS
The Nancy Rogowski Advocate of the Year Award
From the industriousness of Nancy Rogowski’s quest to learn more and to spark hope in others—to the volunteer efforts, initiative, and support of thousands to transform our understanding of the Ehlers-Danlos syndromes—The Ehlers-Danlos Society emerged in May 2016 as the very first truly international organization devoted entirely to global research and the support, advocacy, and advancement of the understanding of EDS.
This award honors individuals who have demonstrated excellent advocacy and dedication to raising awareness and understanding for our community living with Ehlers-Danlos syndromes, hypermobility spectrum disorders, and the associated symptoms and conditions.
Lifetime Achievement Award
This award honors outstanding leaders, advocates, researchers, and health professionals who have made significant contributions to the advancement of EDS and HSD over their lifetimes. They represent the most supportive and dedicated people in the field of Ehlers-Danlos syndromes, hypermobility spectrum disorders, and the associated symptoms and conditions.
Pioneer in EDS and HSD Research Award
This award honors individuals who have demonstrated a long-term commitment to outstanding research and progression into Ehlers-Danlos syndromes, hypermobility spectrum disorders, and the associated symptoms and conditions.
Pioneer in EDS and HSD Clinical Care Award
This award honors individuals who have demonstrated a long-term commitment to outstanding clinical care for those living with Ehlers-Danlos syndromes, hypermobility spectrum disorders, and the associated symptoms and conditions.
Outstanding Consortium Member Award
This award honors individuals who have demonstrated excellent leadership skills and commitment to the International Consortium for those living with Ehlers-Danlos syndromes, hypermobility spectrum disorders, and the associated symptoms and conditions. This award is decided by the Consortium steering committee.
Community Choice: Community Advocate
This award is voted for by the community, for the community, and honors individuals who have made a difference to the lives of community members through advocacy and supporting people on their journeys with EDS and HSD.
Community Choice: Healthcare Professional
This award is voted for by the community and colleagues, honoring healthcare professionals who have demonstrated a commitment to supporting patients and working for awareness and education for the wider community.
EDS ECHO Award
The EDS ECHO award honors individuals who have demonstrated excellent leadership skills and commitment to the EDS ECHO programs and events by continuously advocating for those living with Ehlers-Danlos syndromes, hypermobility spectrum disorders, and the associated symptoms and conditions.
AWARDEES
The Nancy Rogowski Advocate of the Year Award
Dr. Cortney Gensemer, Ph.D.
Dr. Cortney Gensemer, Ph.D., is a postdoctoral scholar dedicated to researching Ehlers-Danlos syndromes (EDS) and related conditions. Her work is instrumental in advancing the understanding and treatment of these disorders. Active on social media as @CortDoesScience, she engages with the community to raise awareness and provide valuable information.
Lifetime Achievement Award
Prof. Raoul Engelbert, Director of Research at the Amsterdam University of Applied Sciences and senior staff at the University Hospital AMC, is renowned for his extensive work with EDS & HSD. His research focuses on the transition of healthcare for complex patients, including children with collagen diseases. He has guided numerous PhD candidates, published over 100 peer-reviewed articles, and is a sought-after speaker at international conferences. His dedication has significantly advanced understanding and care for those with EDS and HSD.
Outstanding Consortium Member
Dr. Norman Marcus, a pioneer in pain management, has established several pain centers, including the first in NYC. With a background in Psychiatry and Psychosomatic Medicine, he has led significant advancements in muscle pain evaluation and treatment. He has served as president of the American Academy of Pain Medicine and contributed extensively to pain treatment research, including work on photobiomodulation for hypermobile EDS pain.
Dr. Marcus is a committed member of The Ehlers-Danlos Society International Consortium, which brings together leading experts worldwide to advance research, diagnosis, and treatment for Ehlers-Danlos syndromes and related disorders.
Outstanding Contribution to EDS ECHO
The EDS ECHO award honors an individual who has demonstrated excellent leadership skills and commitment to the EDS ECHO programs and events by continuously advocating for those living with EDS, HSD, and the associated symptoms and conditions.
Jeannie Di Bon is a prominent movement therapist specializing in hypermobility and Ehlers-Danlos Syndrome (EDS). She founded The Zebra Club, offering safe, effective movement programs for those with EDS & HSD. Her Integrated Movement Method (IMM) combines movement therapy and neuroscience to help manage chronic pain and improve quality of life. Jeannie’s contributions have provided vital resources and support for the EDS & HSD community, emphasizing the importance of tailored, accessible care.
Pioneer in EDS and HSD Research
Dr. Jessica Eccles
Dr. Jessica Eccles is a leading researcher and clinician specializing in brain-body medicine at Brighton and Sussex Medical School. Her pioneering work explores the relationship between joint hypermobility, autonomic dysfunction, and psychiatric symptoms, focusing on conditions like EDS & HSD. Her contributions include numerous grants, over 50 peer-reviewed publications, and significant advancements in understanding brain-body interactions and chronic pain management.
Pioneer in EDS and HSD Clinical Care for those with EDS & HSD
Dr. Hani Hattar
Dr. Hani Hattar is a distinguished pain specialist at the Pain Unit in Vasterviks Hospital, Sweden. With specialities in Pain Management, Rehabilitation Medicine, and Geriatrics, Dr. Hattar has authored books and lectured on pain in diverse cultures. Since 1993, he has dedicated his career to EDS & HSD, with a particular focus on pain management.
Community Choice Award: Healthcare Professional
Lindsay DeWolfe, DNP, FNP-C
Lindsay DeWolfe, DNP, FNP-C, is a dedicated practitioner at Arizona Arthritis & Rheumatology Associates, specializing in diagnosing and directing care for Ehlers-Danlos Syndrome (EDS) patients. She has created a comprehensive roadmap to facilitate the healing journey, tirelessly providing resources and information to support EDS patients, ensuring a safe space free from the gaslighting often encountered. Her impactful work has earned her the Healthcare Professional of the Year award, as voted by the EDS & HSD community.
A testimonial from someone who voted for her:
Lindsay has been integral to the outreach and ability to help so many get diagnosed in the state of Arizona and even outside of it. Since she has joined AARA Rheum practice she has widened the scope of our ability to serve the underserved in this community. She created the famous “EDS Roadmap” to help facilitate and direct care for our zebras in the valley. Without her, we wouldn’t have reached so many more souls in need of this diagnosis and care. She’s one in a million!!!
Community Choice Award: Outstanding Community Member
Mars Lombardi is a patient expert and disability justice activist. They are pursuing a Master’s in Speech-Language Pathology, focusing on complex neuroimmune and neurodegenerative disorders. Mars is an advocate for EDS/HSD, rare disease awareness, and public health legislation. They have a diverse background, including roles as an EMT and firefighter, authoring a book on children’s perspectives on divorce, and working with the Concussion Legacy Foundation. Mars actively volunteers with The Ehlers-Danlos Society and contributes to accessible arts education through a non-profit organization.
The Nancy Rogowski Advocate of the Year Award
This award honors an individual who has demonstrated excellent advocacy and dedication to raising awareness and understanding for our community impacted by EDS and HSD.
Maggie Buckley has been a Patient/Health Advocate for three decades while living with chronic pain from EDS. The Ehlers-Danlos Society is so incredibly grateful for all Maggie has done for the organization and the community over the years, and are delighted to present this award to Maggie.
Lifetime Achievement Award
Dr. Byers has worked for over four decades with families with heritable connective tissue disorders including Ehlers-Danlos syndromes, to aim to identify the underlying genetic bases of these conditions. We are all so grateful for all you have done for our community.
Outstanding Consortium Member
Voted for by colleagues and The Ehlers-Danlos Society staff team, this award honors a person with unparalleled dedication to the international consortium who has demonstrated a commitment to supporting patients and working for awareness and education for the wider community.
Dr. Louise Tofts Louise is an accredited rehabilitation physician and pediatrician actively involved in research into hypermobility and EDS.
Outstanding Contribution to EDS ECHO
EDS ECHO Pediatrics Team, North America
Congratulations to the EDS ECHO Pediatrics team, North America, on their outstanding success in delivering the program to healthcare professionals. We are delighted to present Dr. Sarah Schwartz, Constance O’Connor, and Ramandeep Sran with this award.
Pioneer in EDS and HSD Research
Dr. Marina Colombi is a clinical and molecular geneticist who specializes in heritable disorders of connective tissue. Dr. Colombi, we are so grateful for all you have done for our community, and for your hard work and dedication to our cause.
Pioneer in EDS and HSD Clinical Care
Prof. Aziz is a neuro gastroenterologist, specializing in diseases of the gut that affect its nervous system, muscles, and connective tissue. Professor Aziz, we are all so grateful for all you have done and continue to do for our community.
Community Choice Award: Healthcare Professional
This award is voted for by the community and colleagues, honoring healthcare professionals who have demonstrated a commitment to supporting patients and who are working for awareness and education for the wider community.
Dr. Andrew Sharobeem approaches his patients with compassion and utilizes an integrative method to optimize their quality of life. He received an astonishing number of nominations from his extremely grateful patients!
Community Choice Award: Community Advocate
This award is voted for by the community, for the community, and honors individuals who have made a difference in the lives of community members through advocacy and supporting people on their journeys with EDS and HSD.
Jessica is a remarkable influencer who lives with hypermobile Ehlers-Danlos syndrome. Through warm and amusing videos Jessica adds vintage fabulousness to a life with disabilities and chronic illnesses.
The Nancy Rogowski Advocate of the Year Award
Mark Martino
Mark began working with Ehlers-Danlos National Foundation as a typographer but quickly found because of his nonprofit experience he could be helpful in a variety of ways: illustrating and designing graphics; writing and producing the many publications of the foundation including Loose Connections and resource guides; and bringing up-to-date, relevant information to members and friends on the web site, Facebook page, and wherever else the foundation could reach those with EDS and their friends and families. His work has been continually challenging, and changing as the foundation matured and grows into its expanded international mission as The Ehlers-Danlos Society.
Mark is Editor at The Ehlers-Danlos Society, and we are so grateful every day for his support and dedication to this community.
Lifetime Achievement Award
Dr. Fraser Henderson
Dr. Henderson entered private practice in Chevy Chase, Maryland, as Director of Neurosurgery at Doctors Hospital and Director of the Chiari Center of Excellence, where he is focused on the development of the understanding and treatment of deformity-induced injury to the brainstem and spinal cord in Chiari Malformation and Ehlers Danlos Syndrome. He is the inventor of 11 devices and concepts relating to disorders of the brainstem and spinal cord, has published over 50 peer-reviewed articles and book chapters, and has given over 140 invited lectures with a focus on craniocervical disorders, Chiari malformation, cancer, radiosurgery, and unusual problems of the spine. Thank you for your dedication to the EDS and HSD community!
Outstanding Consortium Member
Dr. Sally Pezaro
Dr. Pezaro is an academic midwife based at Coventry University in the United Kingdom, a Fellow of the Royal College of Midwives (FRCM), and an editorial board member of the British Journal of Midwifery, Evidence-Based Midwifery, MIDIRS, and the International Journal of Childbirth. She is also the lead midwife for hedstogether, a project which has enabled many networking and awareness-raising activities, building up a team of people with a range of experiences to co-create tools in relation to childbearing, hEDS, and HSD. Dr. Pezaro is the lead author of ‘Hypermobile Ehlers-Danlos syndrome during pregnancy, birth and beyond’, which has remained the most widely read article in the British Journal of Midwifery since its publication in 2018.
Dr. Pezaro is leading the Pelvic Floor and Bladder Disorders Working Group along with many other expert members of The International Consortium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders, to produce guidelines for the management of pregnancy, birth, and post-natal recovery in the context of hypermobile Ehlers-Danlos syndrome (hEDS), hypermobility spectrum disorders (HSD), and vascular Ehlers-Danlos syndrome (vEDS).
Outstanding Contribution to EDS ECHO (New for 2022)
Dr. Leslie Russek
The EDS ECHO award honors individuals who have demonstrated excellent leadership skills and commitment to the EDS ECHO programs and events by continuously advocating for those living with Ehlers-Danlos syndromes, hypermobility spectrum disorders, and the associated symptoms and conditions.
Leslie Russek, PT, DPT, Ph.D., OCS, is Professor Emeritus, teaching musculoskeletal physical therapy in the Clarkson University Doctor of Physical Therapy program. She is an Orthopedic Certified Specialist with a sub-specialization in hypermobile Ehlers-Danlos syndrome (hEDS), headaches, fibromyalgia, and other causes of chronic pain. She has published in the areas of hEDS, fibromyalgia, and chronic pain, and was one of the first physical therapists to publish on hypermobility syndrome in the United States. Her current research is looking at the prevalence of hEDS among physical therapy patient populations in the U.S. Dr. Russek leads the North American hub of the Allied Health Professionals ECHO.
Pioneer in EDS and HSD Research
Dr. Christina Laukaitis
Christina Laukaitis is an associate professor at the University of Illinois and the Carle Illinois College of Medicine. After earning her MD and Ph.D. from the University of Illinois, she completed a residency in Internal Medicine at St. Vincent Hospital in Indianapolis, IN, and a Medical Genetics fellowship at the University of Washington. She is board-certified in Internal Medicine and Medical Genetics. She joined the faculty at the UA College of Medicine in 2008 and moved to the University of Illinois in 2021.
Dr. Laukaitis’ research has both basic and applied aspects. Her basic science work focuses on an unstable region of the mouse genome containing 64 genes encoding pheromones. Her clinical practice and research focus on diagnosing and managing patients with genetic syndromes. She cares for a large cohort of people with various forms of Ehlers-Danlos syndrome and has organized the hEDS GENE study, a major effort to identify genes predicting the hypermobility type of EDS.
Dr. Christina Laukaitis, we are so grateful for all you have done for our community, and for your hard work and dedication to the pioneering HEDGE project, searching for the genetic causes behind hypermobile EDS (hEDS).
Pioneer in EDS and HSD Clinical Care
Dr. Jane Simmonds
Dr. Jane Simmonds is a physiotherapist with more than 25 years of clinical experience working with people with Ehlers-Danlos syndromes and hypermobility spectrum disorders. She is very committed to helping to improve the lives of people living with EDS through fostering and supporting teams of clinicians, researchers, and educators. Originally from Perth Western Australia, Jane now lives and works in London where she combines an academic career at University College London with clinical work at the Hypermobility Unit where she leads the physiotherapy provision and specializes in working with children and families. Dr. Simmonds is the Chair of the physiotherapy working group of the International Consortium on EDS and HSD. Jane has authored more than 50 publications on EDS and hypermobility-related topics and leads national and international EDS and hypermobility CPD training events for health and exercise professionals.
Community Choice Award: Healthcare Professional
Dr. Valerie Iovine
Dr. Valerie Iovine is a physical therapist who specializes in treating hEDS. Dr. Iovine received an astonishing number of nominations from her extremely grateful patients. Some comments include:
“Valerie is one of the most caring and compassionate people I know. She dedicates her life to her passion and there is no one more deserving of this award. “
“Valerie is a champion in the rehabilitation of individuals with Ehlers-Danlos syndrome. She provides top-quality, compassionate care for a large population of individuals with EDS. She tirelessly advocates for her patients as if they were her own family members. She was instrumental in changing corporate policy regarding the treatment of individuals with EDS and helped ensure that these patients receive 1:1 sessions each time they visit her in her office. Valerie strives to provide treatment that is both supported by evidence and personalized to each person she interacts with. She strives to help each individual with EDS reach their full potential and achieve their goals of care.”
“Valerie is a passionate physical therapist dedicated to helping people with EDS. She is compassionate and empathetic. She personalizes every treatment plan and advocates for health care and streamlined medical care for this population.”
Community Choice Award: Community Advocate
Sydney Severance
Sydney Severance is an 18-year-old with hEDS who has been really struggling with her health lately. Dr. Chip Norris quotes: ‘while her challenges with the disease are unfortunately not uncommon for many of these patients, her level of compassion, outreach, and advocacy are well beyond any patient that I have met. Sydney makes people better, she provides hope and is an inspiration for all of us. We are all better because of the global impact that she is making.’
The Nancy Rogowski Advocate of the Year Award
Linda Neumann-Potash
Linda was diagnosed with hypermobile EDS in 1985 and has spent the last 30 years advocating for those affected by EDS and their families.
Linda served as the Executive Director of The Ehlers-Danlos National Foundation from 1996 to 2003. She also served on the Board of Directors from 1991 to 1995 and in recent years she rejoined the board of the society.
Linda earned her Bachelor of Science degree in Community Health from the University of Northern Colorado and a second Bachelor of Science Degree in Nursing from Mount Saint Mary’s College in Los Angeles, California. She obtained a Master’s of Nursing Degree from UCLA in Los Angeles, California.
Linda is a Case Management Nurse at Nebraska Medicine, The Nebraska Medical Center in Omaha Nebraska. She has worked in her current position since 2007. Linda has over 30 years of experience in nursing working with both adults and children and has been working tirelessly through the pandemic, doing what she does best – caring for others.
Lifetime Achievement Award
Dr. John Mitakides
Dr. Mitakides is an expert in the field of craniofacial pain and TMJ disorder, with a special focus on craniofacial pain and dental manifestations in the Ehlers Danlos syndrome patient.
Dr. Mitakides is a Diplomate of the American Academy of Craniofacial Pain, the highest level of achievement awarded by AACP. He is also a Diplomate of the American Board of Craniofacial Dental Sleep Medicine. Dr. Mitakides was a member of the Professional Advisory Network of the Ehlers-Danlos National Foundation, the leading organization serving EDS patients and physicians, the only dentist to be so recognized.
Dr. Mitakides is the founder of the TMJ Treatment Center, where he leads a highly-trained and qualified team of professionals, with advanced TMJ certification. He is a frequent lecturer at national and international conferences in the area of TMJ and Craniofacial Pain diagnosis and treatment techniques and has done so much to advance understanding in this area for the community.
Outstanding Consortium Member
Dr. Natalie Blagowidow
Dr. Blagowidow received her MD degree from Cornell University Medical College, NY. Her residency training was in the Department of Obstetrics and Gynecology at the Hospital of the University of Pennsylvania, Philadelphia, PA. Dr. Blagowidow pursued specialty training as a Fellow in Reproductive Genetics and Human Genetics, Department of Obstetrics and Gynecology, Hospital of the University of Pennsylvania, and in the Division of Human Genetics at The Children’s Hospital of Philadelphia.
Dr. Blagowidow is board-certified in both clinical genetics and clinical cytogenetics. She is also a Founding Fellow of the American College of Medical Genetics and chairs the pelvic disorders group in the International Consortium.
Pioneer in EDS Research
Dr. Sherene Shalhub
Dr. Shalhub is a vascular surgeon, translational researcher at the University of Washington (UW), and the Director of the Multidisciplinary Vascular Genetics Clinic at the University of Washington Medical Center. She holds the position of Assistant Professor in the Department of Surgery and she is an affiliate faculty of the Surgical Outcomes Research Center (SORCE).
Dr. Shalhub aims to provide high-quality care to patients suffering from rare vascular conditions such as vascular EDS. Her goal is to improve the success of surgical repair and long-term survival for these high-risk patients while maintaining an excellent quality of life in a manner that is in line with their priorities and personal values. Dr. Shalhub is the lead investigator for the Vascular Ehlers-Danlos Collaborative funded by the Patient-Centered Outcomes Research Institute (PCORI) and for the Vascular Ehlers-Danlos Collaborative Research Study.
Pioneer in EDS and HSD Clinical Care
Dr. Anne Maitland
Dr. Anne Maitland is a Fellow of the American College of Allergy, Asthma, and Immunology and a member of the American Academy of Allergy, Asthma, and Immunology (AAAAI). Her clinical focus is to upgrade efforts to meet the needs of under-served communities, plagued by immune-mediated disorders, such as mast cell activation disorders, such as anaphylaxis, asthma, and food sensitivities as well as primary immunodeficiencies and EDS and HSD. Dr. Maitland is also the chair of the allergy and immunology group in the EDS and HSD International Consortium.
Community Choice Award: Healthcare Professional
Dr. David Saperstein
Dr. Saperstein is an experienced Medical Doctor with a demonstrated history of working in the hospital & health care industry. Skilled in Clinical Research, Medical Education, Medicine, Neurology, and Healthcare, with a strong focus on those with EDS and HSD.
One testimonial received for this winner from a voter in this category read: “Dr. Saperstein is the most caring and patient doctor. He takes the time to listen to his patients. He has extensive knowledge of EDS and POTS, and he is the first doctor to take me seriously in my whole life. He connected my stripes and is still trying to when I have weird new issues arise.”
Community Choice Award: Community Advocate
Roger Chriss
Roger has been educating and advocating for the EDS/HSD and chronic pain communities for many years. He has been a very active Inspire member since 2015, and always has informational, helpful, and caring responses to share. He is on the board of directors and a regular columnist for the Pain News Network. He is also the co-host for The Ehlers-Danlos Society’s Let’s Chat: Men virtual support group. Roger has been a big proponent and supporter of the Society’s work. Staff members have enjoyed working with him.
One of the testimonials said- “Roger is the type of person who is always willing to help. He knows so much about EDS and HSD and helps me with learning more about it and how to manage it. I also enjoy seeing him host the men’s virtual support group. I am so glad Roger is in our community.”
Nancy Rogowski Advocate of the Year Award
Chrystal Nichols
Lifetime Achievement Award
Alan Pocinki
Outstanding Consortium Member
Nigel Burrows
Pioneer in EDS Research
Jessica Eccles
Pioneer in EDS and HSD Clinical Care
Fraser Burling
Lifetime Achievement Award
Dr. Clair Francomano
Outstanding Contribution Award
Sandra Aiken Chack
Outstanding Contribution Award
Shane Robinson
Outstanding Consortium Member
Dr. Jane Simmonds
Pioneer in EDS Research
Dr. Marco Castori
Pioneer in EDS and HSD Clinical Care
Dr. Alan Hakim
Volunteer of the year
Sarah-Jo Ritchie
Advocate of the Year
Jameela Jamil
Lifetime Achievement Award
Dr. Anne De Paepe
The Nancy Rogowski Award
Linda Neumann-Potash
Lifetime AchievementAward
Dr. Brad Tinkle
Volunteer of the Year
Victoria Graham
Community Choice Award
Dr. Brad Tinkle
Lifetime AchievementAward
Professor Rodney Grahame
Pioneer in EDS Research
Dr. Peter Byers
Pioneer in EDS Research
Professor Fransiska Malfait
Pioneer in EDS Clinical Care
Dr. Clair Francomano
Volunteer of the Year
Mark Martino
Volunteer of the Year
Shani Weber
