The Perthes.org is a national education and health organization dedicated to helping adults living with the effects of Perthes, families with children diagnosed with Perthes, and associated difficulties with the Perthes diagnosis. The Foundation’s mission is to create a centralized support community to improve the research, education, and awareness of those diagnosed with Perthes. Perthes.org began in 2017, when a group of parents acknowledged that there was not a single resource dedicated to a disease that would consume most of their children’s childhood. The Board Members today are directly either impacted from a clinical or family perspective.
We believe that access to high quality healthcare and related information is key to the success of treatment and a high quality of life.
Solving the Challenges
Whether we are talking about pain management, the frustration of activity restriction, navigating the school system, or the challenges of daily life during treatment, we are here to help as a community.
A Passionate Team
With partners and volunteers worldwide, we are a spirited team! Our volunteers include parents, clinicians, family and friends, as well as adults who experienced Perthes disease first hand.
Perthes will change your life, but it shouldn’t stop life. Throughout the disease process, there are many activities that may have to be modified. We believe in continued engagement in positive activities!
Co-founder, Legg Calve Perthes Foundation
Wife, mother of three (one with Perthes), and MBA graduate; Colleen’s passion is rooted in personal connections to create synergies in the both the corporate and philanthropic world. She currently works full time as a Director of Strategic Partnerships at First Data and spent the previous 20 years of her career at Yahoo, Careebuilder, Los Angeles Times, and AOL. She lives outside of the Washington, D.C. area.
Shelley Sigmon Crawford
Co-founder, RDMS, RT(R)(M)(ARRT)
Shelley is a licensed radiologic technologist and registered diagnostic medical sonographer with a commitment to patient education and well being. She also has experience in grant writing and is currently enrolled in a Masters of Physician Assistant Studies program on her way to becoming a certified Physician Assistant. Above all else, Shelley is a mother, a friend, and a community member. “I’ve seen Perthes clinically but when it touched a family close to me, my passion was brought full circle. I’m excited to be a part of the Foundation where we can directly impact the lives of those with Perthes through education, advocacy, and research.”
MD, MS, FRCSC
Director, Center of Excellence in Hip Disorders and Director of Research at Texas Scottish Rite Hospital for Children, Professor of Orthopedic Surgery at UT Southwestern Medical Center; Dr. Kim attended McGill University Medical School, Canada Orthopaedic Residency at University of Toronto and completed Fellowship Training at Hospital for Sick Children, Toronto. Dr. Kim is passionate about increasing the awareness of Perthes in the general population and in the medical community so that a diagnosis can be made promptly and treatment can be implemented without delay.
Pediatric Orthopaedic Surgeon and Director of Research at Gillette Children’s Specialty Healthcare in Minnesota; Assistant Professor, University of Minnesota Department of Orthopaedic Surgery. Dr. Laine attended the Columbia College of Physicians and Surgeons for medical school, completed her orthopaedic surgery residency at the University of California, San Francisco and completed her pediatric orthopaedic fellowship training at Texas Scottish Rite Hospital for Children. She is now active in clinical care and clinical research at Gillette Children’s Specialty Healthcare in Saint Paul, Minnesota. She has been interested in Perthes since she was an orthopaedic trainee and is dedicated to finding better answers for children with Perthes and their families. She believes that collaboration is essential to lead to greater awareness and understanding of this condition. She is also a mother of two young children.
Wudbhav "Woody" Sankar
Associate Professor of Orthopaedic Surgery and Director of the Hip Disorders Program at the Children’s Hospital of Philadelphia; Dr. Sankar is a graduate of Cornell University and the University of Pennsylvania School of Medicine. He completed his orthopaedic residency at the University of Pennsylvania, followed by three pediatric orthopaedic fellowships at Children’s Hospital Los Angeles, Shriners Hospitals for Children in Los Angeles, and Boston Children’s Hospital. He is committed to high-quality clinical research in Perthes disease in order to answer our many questions about the condition and develop improved treatment options for the next generation.
Hear what people are saying
Lots of info and relationships made with other parents and time with the doctors was invaluable… The event was very informative and helpful.Perthes Parent
Thank you for everything you have done to help further the study and awareness of Perthes! When my son was diagnosed in September I didn’t know where to turn and your Facebook group has helped to guide our decisions in doctors and treatments. If there’s ever any way I can help from Arizona let me know! I would love to continue to get involved.Perthes Parent
Opportunity to Heal
I didn’t realize how much healing this event was going to bring for me. I’m so thankful for the opportunity! I’m expectant that next year will do the same and more as more people hear about it…Perthes Survivor
The mission of Perthes.org is to create a centralized support community to improve the research, education, and awareness of both children diagnosed with Perthes and adults who continue with live with the effects of Perthes today. Recent studies estimate 5 in 100,000 children will be diagnosed with Perthes Disease, making research and treatment evaluation challenging. For this reason, Perthes.org firmly believes in sharing its goals, information, and research with others in the rare disease field. Perthes.org is proud to collaborate with organizations in the fields of osteonecrosis and rare disease. It is through these collaborative efforts that we are able to advocate for whole patient and whole family health and uphold our commitment to providing information and support for treatment; physical, occupational, and psychological therapies; accommodating technologies and equipment. These efforts further allow the foundation to support the patient into adulthood as the effects of Perthes Disease last a lifetime.
Legg-Calve-Perthes Foundation, Inc. is organized for exclusively religious, charitable, educational and scientific purposes within the meaning of Section 501(c)(3) of the Internal Revenue Code of 1986 or the corresponding provision of any future United States Internal Revenue Law, including, for such purposes, the making of distributions to organizations that qualify as exempt organizations under said Section 501(c)(3) of the Internal Revenue Code of 1986. Specifically, the organization will provide educational programs to the public regarding Perthes as well as benevolent assistance to those in need. Filing status pending approval.