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.
Lauren Cox is a mother of two, a wife, a full-time student at Nashville State majoring in Graphic Design and a patient of Fibrous Dysplasia. In 2012, Lauren began her advocacy journey when she designed the official awareness ribbon for FD/MAS. She started creating awareness merchandise like t-shirts, coffee mugs, and much more. Since then she has expanded her efforts in raising awareness for not only FD/MAS but all rare diseases by making YouTube videos, being extremely active on social media, going on the news, and talking to her elected officials to help make a difference. Lauren has been nominated for multiple awards for her efforts, is on the Speaker’s Bureau for the Young Adult Representatives of RDLA (YARR), and is currently working on creating a comic book series focusing on rare disease patients called “The Heroes of Rare.” She takes real life patients and creates a hero/warrior version of them to not only raise more awareness, but to help other patients not feel alone and that they can not let their rare disease keep them down.
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 Suprise 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.
Tovah Burstein, MFA, is the FDF Community Programs 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
Alison Boyce, MD (Chair) is a pediatric endocrinologist and physician scientist in the Section on Skeletal Disorders and Mineral Homeostasis, National Institute of Dental and Craniofacial Research, National Institutes of Health (NIH). After completing undergraduate studies at the University of Virginia, she received medical and general pediatrics training at Eastern Virginia Medical School, followed by an endocrinology fellowship at the NIH. She holds a faculty appointment at Children’s National Health System, and is active in the joint NIH and Children’s National Health System’s Pediatric Fellowship training program, as well as the Children’s National Bone Health Program. Dr. Boyce’s research focuses on rare disorders of bone and mineral metabolism, including fibrous dysplasia/McCune-Albright syndrome, disorders of fibroblast growth factor-23, and hypoparathyroidism. As chair of the Medical Advisory Council, Dr. Boyce participates in board meetings in a nonvoting capacity.
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.