Adrienne McBride serves as Executive Director and has 15+ years of working in the nonprofit sector in leadership roles. Her professional experience with the autistic adult community, non-traditional students pursuing higher education, and chronically homeless have made her a tireless advocate for underserved populations. She is thrilled to work alongside the patients and caregivers of the FD/MAS community to find better answers and better options for all those who suffer from this rare disease. Adrienne received her undergraduate degree in French and Politics from Fairfield University and her master's degree in business from the University of Maryland.
Tovah Burstein, MFA, is our Community Programs Director 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 FD/MAS communications and community-building in the form of personal stories like centurion Ann Molitor and author Jon Morgan.
Suzie Doody, CPA, retired after 30 years with the Montgomery County Public School system in Maryland and took on the bookkeeper's role. 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/MAS through a close family friend diagnosed with FD/MAS and is highly motivated to use her skills to support the goals of the FD/MAS Alliance.
Lauren Ruotolo is Director, Creative Partnerships at Johnson & Johnson's Global Content Lab’s. She is responsible for the ideation, collaborative content, thought leadership content, and performance of Johnson & Johnson's Global Content Lab’s social/media creative partnerships & video programming content. Lauren is designed with an unstoppable love for learning and life. Lauren’s first-person essay, “Get Shorty,” which shared her philosophies on living with FD/MAS, 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.”
Cindi Brandt Levin J.D.
Cindi Brandt Levin, JD lives in Randolph, New Jersey and is the parent of a 26-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/MAS. She chaired the 2014 NYC Patient and Family Medical Conference, and in 2015 started Team FD/MAS for the Million Dollar Bike run by the UPenn Orphan Disease Center. As Team captain for the past six years, Team FD/MAS has raised close to $750,000 to fund research focused solely on FD/MAS. Cindi has an employment law practice in Morristown, NJ and is a graduate of Northwestern University and NYU Law School.
James Rae, CPA
Jack Kelly serves as president and member of the Board of Directors of the Lymphangiomatosis & Gorham’s Disease Alliance, Inc. [LGDA], a worldwide rare lymphatic disease patient-support organization founded by his late daughter, Jana K. Sheets. The LGDA is focused on expanding access to science and clinical care for a spectrum of life-threatening, complex vascular anomalies. Jack serves as a member of the Board of Directors of the Lymphatic Malformation Institute, is a member of the patient education committee of the VAC/SIG of the American Society of Pediatric Hematology/Oncology, a member of the Rare Bone Disease Alliance, and a member of the Consortium of Investigators of Vascular Anomalies (CaNVAS). He is a former Board member of the Lymphatic Research Foundation, and previously a member of the American Thoracic Society – Public Advisory Roundtable, and the Rare Lung Disease Consortium. Jack is retired from the computer industry and holds an Executive MBA from Pace University, New York, New York.
Jessica Barrett, MPH, is a proud aunt to a MAS Warrior - her niece Maggie. Watching Maggie navigate through life with this condition has motivated Jessica to become a vocal advocate for rare disease research and universal healthcare to ensure more people like her have access to the long-term and affordable care they so desperately need. In addition to the FD/MAS Alliance board, she also serves on the Board of Directors for Green Omaha Coalition on the Membership and Fundraising Committee and the Diversified and Engaged Stakeholders Committee for Omaha STEM Ecosystem. Her goal with joining the FD/MAS Alliance is to make a direct and positive impact on an organization that has helped her family navigate the ups and downs of a MAS diagnosis and hopefully make steps toward a cure!
Joyce Ellis is a parent of a daughter with McCune-Albright Syndrome and lives in the United Kingdom with her husband and three children. Her MAS daughter is a beautiful, bright, and very resilient young lady. Her daughter’s positive attitude in life, despite her condition, gives her a deep appreciation and passion for raising funds for research to treat and cure FD/MAS. Joyce is also a Committee Member of the Fibrous Dysplasia Support Society in the United Kingdom.
Sarah Healy has 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/MAS patients like her son and build a future with better options for FD/MAS patients everywhere.
Lynn Lindaman, MD
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 orthopedic surgery. His professional expertise and personal experience help guide the FD/MAS Alliance.
Carrie Nawrocki lives and works in NJ with her husband, son, and daughter. At the age of 5, her daughter was diagnosed with FD. Carrie began her career as an epidemiologist and is now the Executive Director and Health Officer of two regional health commissions. Her background in epidemiology and love for her daughter paired up for the months leading up to her diagnosis through her daughter's major surgery. Still to this day, she continues to learn more about this disease. Carrie wishes to lend her experience in the field to the foundation to make any positive contribution to other individuals living with FD/MAS.
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, a talent for 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 has MAS/PFD. She has done advocacy work through the 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 Facebook support page by welcoming new members.
Kiran Kumar M. Yarlagadda
Kiran Kumar M. Yarlagadda lives in North Carolina. He is a parent of a son with fibrous dysplasia. He is a technologist and works for a bank. He worked as CTO, IT Director in prior roles, and has led engineering teams for global companies in financial services and healthcare verticals. He has a master’s degree from Columbia University, majoring in technology and management.
Michael Collins, MD
Dr. Collins is a physician-scientist and trained in Endocrinology and Metabolism at the National Institutes of Health (NIH). He is currently a tenured Senior Investigator and Chief of the Skeletal Disorders and Mineral Homeostasis Section at the National Institute of Dental and Craniofacial Research at the NIH. His research is broadly focused on bone biology and mineral biology, and FD/MAS is one of his major areas of focus. He and his team have spent decades leading studies that have improved our understanding of the pathophysiology of FD/MAS and defined the standard of care for treatment. His contributions have touched the lives of countless patients and families worldwide, who will continue to benefit for years to come. His ongoing work in this field serves as a beacon of hope to the FD/MAS community in their search for new knowledge and treatments.
Alison Boyce, MD
Alison Boyce, MD, 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. She is active in the joint NIH and Children’s National Health System’s Pediatric Fellowship training program and 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.
Andrew Shenker, MD, PhD
Andrew Shenker, M.D., Ph.D. He was a member of the National Institutes of Health team that discovered the gene mutation that causes fibrous dysplasia and McCune Albright syndrome (FD/MAS) and was the first to demonstrate its presence in osteoblastic cells and abnormal endocrine and non-endocrine cells from patients. An expert in cell signaling, rare diseases, and gene therapy, Dr. Shenker is a pediatric physician-scientist with over 20 years of experience in academic, biotech, and pharmaceutical industry settings. Dr. Shenker has led teams responsible for key aspects of the clinical development of three marketed drugs.
Charles Harles, JD
Charles Harles, JD, was our founder and friend. The entire fibrous dysplasia and McCune-Albright syndrome community mourn the loss of this beloved leader whose vision and dedication built this organization. Charlie’s impact on the FD/MAS community is evident in the incredible legacy of the FDF, the community that he helped build, and the research he encouraged. Instead of flowers, Charlie’s family asked that donations be sent to the Fibrous Dysplasia Foundation. We are grateful for his vision, saddened by this loss, and determined to continue his legacy. Read more about Charlie’s life and legacy here.
Amanda Konradi, PhD
Amanda Konradi, PhD, lives in Baltimore, MD, 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, find its genetic marker, and understand its immunological aspects. Amanda is concerned with educating patients and parents to assert themselves with medical personnel and educators and help 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
Catherine Fairchild, JD, lives in Baton Rouge, LA. She is the parent of a son with FD/MAS. 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 to manage pain related to FD/MAS.