Fibrous Dysplasia Foundation Leadership
Catherine Fairchild, JD, lives in Baton Rouge, Louisiana. She is the parent of a teenage son with MAS/FD. Her son navigates the challenges of severe FD with a gracious and charming personality, and a bit of a wicked wit. Catherine’s son has had much success with mindfulness practices for management of pain related to FD.
Lauren Ruotolo is an Entertainment Content Marketing specialist who most recently was the Vice President of Marketing & Public Relations at Madonna’s YouTube company DanceOn. Ruotolo previously served for almost a decade as the Director of Entertainment Promotions at Hearst Magazines in New York City. Lauren’s first-person essay “Get Shorty,” which shared her philosophies on living with McCune-Albright syndrome, was published in Marie Claire magazine in 2009. Soon after, Ruotolo penned her first book titled “Unstoppable in Stilettos—A girl’s guide to living tall in a small world.” Visit Lauren on Facebook, follow her on Twitter (@laurenjaenyc), or Instagram (@laurenruotolo).
Sue Barnicle is a retired CPA with 30+ years of experience in private industry and public accounting. Sue has 4 wonderful children, and 6 amazing grandchildren including a granddaughter who has FD/MAS. Fully enjoying her retirement, she splits her time between two paradises, Cape Cod, MA in the summer and Naples, FL in the winter. She is passionate about using her skills to support others. In addition to serving as the Treasurer of the Fibrous Dysplasia Foundation, she is works as a Tax Preparer at an AARP Tax Clinic, Financial Counselor at a women’s empowerment nonprofit, and a Client Advocate for St. Vincent de Paul and Our Lady of the Cape Church in Brewster, MA.
Kelly Cohen lives in Lake Forest, Illinios with her husband and two children. Her son has been affected by Fibrous Dysplasia and McCune-Albright Syndrome since birth, and she has used skills that she developed as a Pediatric ICU nurse to help direct his care and improve his life. She is passionate about raising funds for research to treat and cure fibrous dysplasia.
Other Voting Members
Spitzi Barnicle has been a board member since 2010. She lives in Portland, Oregon with her husband and 3 children where we works as a nurse. As a parent of a middle-school aged girl with MAS, her interest is to gather support for research efforts geared toward finding better treatments and a cure for FD/MAS.
Cindi Brandt Levin J.D. lives in Randolph, New Jersey and is the parent of a 22-year-old daughter who has FD in her hip and femur. Inspired by her amazing daughter, Cindi is passionate about finding better treatments and a cure for FD. She chaired the 2014 NYC Patient and Family Medical Conference, and started the FD Team for the UPenn Million Dollar Bike Ride which raised over 190,000 for FD research in 2015 and 2016. Cindi has an employment law practice in Morristown, NJ and is a graduate of Northwestern University and NYU Law School.
Jen Coleman lives in Midland, Michigan where she is raising a teenage with Fibrous Dysplasia and McCune-Albright Syndrome. Jen created the successful Tri-City Kids’ Triathlon as a fundraiser for the FD Foundation. Jen is a 1991 graduate of the US Naval Academy.
Rod Ellis lives in Atlanta, Georgia with his wife Joyce and 3 children. As a parent of a middle school aged girl with MAS he is interested in improving education and awareness for families impacted by MAS / FD as well as a helping support efforts for research into MAS / FD. Rod is a UK qualified accountant.
Jack Kelly is president and member of the Board of Directors of the Lymphangiomatosis & Gorham’s Disease Alliance [LGDA], a worldwide rare lymphatic disease patient-support organization founded by his late daughter, Jana K. Sheets, which is focused on expanding the access to science and clinical care for a life-threatening disease affecting major systems of the anatomy including the musculoskeletal system. Jack is a member of the Board of Directors of the Lymphatic Malformation Institute, a member of the American Thoracic Society – Public Advisory Roundtable (PAR), the Rare Lung Disease Consortium, the Vascular Anomalies Patient Education committee of the American Society of Pediatric Hematology/Oncology, the Rare Bone Disease Network (former co-chair), and the Governance Committee of the National Bone Health Alliance. He is a former Board member of the Lymphatic Research Foundation. Jack is retired from the computer industry and holds an Executive MBA from Pace University, New York, New York.
Kiran Murty lives in New Jersey. He is a parent of a son with fibrous dysplasia. He offers technology consulting services for his clients. In prior roles, he worked as CTO, IT Director and has led engineering teams for global companies in healthcare and financial services verticals. He has a masters degree for Columbia University, majoring in technology and management.
Deanna Portero, PMP, is the Executive Director of the Fibrous Dysplasia Foundation. She joined FDF with valuable experience in patient registries, research grant administration, rare disease advocacy, and project management. She previously held positions at the National Organization for Rare Disorders. Deanna is a graduate of Dartmouth College. She is passionate about improving the lives of FD/MAS patients worldwide, and accelerating progress toward better treatments and cures.
Tovah Burstein, MFA, is an FDF Program Manager with years of nonprofit experience and graduate-level training in non-fiction writing. Tovah has a passion for helping patients and families navigate quality care rooted in her personal experience with a close family member with a rare disease. Tovah has become the main point of contact for patients and families seeking informational resources. She also brings her empathy and skill to FDF communications and community-building in the form of personal stories like centurion Ann Molitor and author Jon Morgan.
Key Non-voting Contributors
Dr. David Burr is a Distinguished Professor at Indiana University, holding appointments in Anatomy and Cell Biology in the School of Medicine, and in Biomedical Engineering at Indiana University-Purdue University, Indianapolis (IUPUI). He currently serves as the Associate Vice Chancellor for Research at IUPUI. Dr. Burr has been a leader in understanding the role of skeletal fatigue and mechanical adaptation of bone and cartilage. Dr. Burr was presented with the Borelli Award by the American Society of Biomechanics in 2008, and was the recipient of the Henry Gray Scientific Achievement Award from the American Association of Anatomists in 2015. Dr. Burr is the chair of the Scientific Advisory Council.
Michael T. Collins, MD is an endocrinologist whose area of specialty is metabolic bone diseases and mineral metabolism. He is the Chief of the Skeletal Clinical Studies Unit of Craniofacial and Skeletal Diseases Branch at the National Institutes of Health in Bethesda, MD. The primary focus of his research is polyostotic Fibrous Dysplasia (PFD) and the McCune-Albright syndrome (MAS). He is the principal investigator on several clinical studies of patients with PFD/MAS and is chair of the Medical Advisory Council.
Charles Harles, J.D. lives in Washington, D.C. He has McCune-Albright Syndrome and FD. Charles (Charlie) works on public policy issues relating to employment for persons with disabilities. He has participated in NIH research on FD since 1999 and is a founding member of the Fibrous Dysplasia Foundation.
Amanda Konradi, Ph.D. lives in Baltimore, Maryland with her two children, where she teaches sociology courses at Loyola University. She, three siblings, and her daughter have Cherubism. They have participated in studies to describe the disease, to find its genetic marker, and to understand its immunological aspects. Amanda is concerned with educating patients and parents so they can assert themselves with medical personnel and educators and with helping affected children find ways to experience themselves positively. Amanda played a key role in the creation of the FD/MAS Patient Registry.
Ann Underhill is a British citizen with FD living in Chandler’s Ford, England. She is retired. She was an IBM as programmer and planner. In 2007, Ann helped coordinate the first Fibrous Dysplasia patient conference in Britain and form the first FD organization (FDSSUK): www.fdssuk.org.uk. Michael Cantwell., Current Chair of FDSSUK: www.fdssuk.org.uk