The Ehlers-Danlos Society Awards

The Ehlers-Danlos Society Awards

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 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.

AWARDEES

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
Outstanding Consortium Member
Pioneer in EDS Research
Jessica Eccles
Pioneer in EDS and HSD Clinical Care
Lifetime Achievement Award
Outstanding Contribution Award
Outstanding Contribution Award
Shane Robinson
Outstanding Consortium Member
Pioneer in EDS Research
Pioneer in EDS and HSD Clinical Care
Volunteer of the year
Sarah-Jo Ritchie
Advocate of the Year
Lifetime Achievement Award
The Nancy Rogowski Award
Lifetime Achievement Award
Volunteer of the Year
Victoria Graham
Community Choice Award
Lifetime Achievement Award
Pioneer in EDS Research
Pioneer in EDS Research
Pioneer in EDS Clinical Care
Volunteer of the Year
Volunteer of the Year