Fibrous Dysplasia Foundation Leadership
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).
Cindi Brandt Levin J.D. lives in Randolph, New Jersey and is the parent of a 24 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 $570,000 for FD research in four years. Cindi has an employment law practice in Morristown, NJ and is a graduate of Northwestern University and NYU Law School.
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.
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.
Other Voting Members
Kathy Crews is a patient with polystotic FD. Kathy has over 35 years of upper management experience in two international businesses and one regional to the Midwest in conjunction with over 15 years in Hospice. Now disabled from FD, Kathy keeps busy with her husband and four grown children.
Joyce Ellis is another FD/MAS parent who has joined the board. Joyce lives in Atlanta, Georgia with her husband and three teenage children. Her MAS daughter is a bright, energetic and very resilient young lady who, like any teenager, loves life as it comes. Her daughter’s positive attitude in life gives her a deep appreciation and passion for raising funds for research to treat and cure FD and MAS.
Sarah Healy joins the FDF with over 15 years of public relations, sales and event planning experience. Her career has brought her to work for institutions such as the Philadelphia Chamber of Commerce, New York City’s Grand Hyatt hotel, and Forbes magazine. After moving to Delaware in 2000, she co-founded Maverick Marketing, a full service strategic marketing, public relations, and event planning company working with clients in the Mid-Atlantic Region. Sarah was moved to join the board to support FD patients like her son and build a future with better options for FD and MAS patients everywhere.
Dr. Lynn Lindaman is a pediatric orthopedic surgeon living in West Des Moines, Iowa. Before Dr. Lindaman pursued medicine, he earned his Masters in Science Education and taught math and science, and coached football and track and field. His diagnosis as an FD patient eventually lead him to medicine, and specifically orthopaedic surgery.He will bring both his professional expertise and personal experience to help guide the Foundation.
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.
Jocelyn Pederson has been active in the FD/MAS community through advocacy and awareness building with Rylan’s Rhythms. Her kind and musically talented son Rylan has MAS and PFD. He uses his love of music, his talent playing guitar and writing songs to share his experience and bring hope. Jocelyn supports and nurtures her son’s passion for making a difference and for fighting FD/MAS.
Leah Surprise is the proud mother of Ellasyn who is 10 years old and has MAS/PFD. She has done advocacy work through MAGIC Foundation with presentations in schools for nurses and teachers to take growth disorders more seriously. She also helps the FD/MAS community through the Faceook support page by welcoming new members with diagnosis and navigating insurance company rules with rare disorders.
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 the 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.
Suzie Doody, CPA, MBA retired after 30 years with the Montgomery County Public School system in Maryland and took on the role of FDF’s Bookkeeper. She and her husband live in Mt. Airy, Maryland, and spend part of their time at their beach house in Rehoboth Beach, Delaware. Suzie has a daughter and two step-sons and enjoys spending time with her seven grandchildren. She has a personal connection to FD through a close family friend diagnosed with FD/MAS and is highly motivated to use her skills to support the goals of the foundation.
Teneasha Washington, PhD, MPH, is the FDF Research Programs Manager with years of experience working in research and nonprofit settings. She is a champion for community participatory research, addressing health inequalities, and an advocate for inclusion of individuals with disabilities in all aspects of life. In previous roles, she has served as a facilitator of multiple grants focused on maternal and child health among mothers at the Jefferson County Committee for Economic Development (JCCEO), diabetes and high blood pressure interventions among African Americans, needs assessments related to health, education, safety, and economic security; mixed-methods studies, evaluation of university nursing school programs, and church interventions for connecting communities to health care resources. She also brings valuable experience in developing grant programs from the ground up.
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.
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.