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, CT 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.
Anne Corvelle is a parent of a daughter with MAS/PFD. Ann spent over 10 years working in non-profit organizations in Lancaster County, Pennsylvania, currently in fundraising. Besides spending time with her family and working, she is heavily involved in her children’s school and doing whatever work the FD/MAS Alliance asks of her. Ever since her daughter was diagnosed in 2016, she has been on a mission to bring attention to FD/MAS in the hopes of there one day being a treatment or cure for everyone affected by these diseases.
Cindi Brandt Levin J.D.
Cindi Brandt Levin, JD, lives in New Jersey and is the parent of a daughter with 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. With Cindi as Team FD/MAS Captain for the past eight years, Team FD/MAS has raised over $1 million 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.
Malissa Kenney has spent over 25 years working in the non-profit disabilities work sector, 20 of which in leadership positions. Her experience serving organizations such as United Cerebral Palsy, Independence Associates, and the Arc of Greater Plymouth has made her a fierce advocate for diversity, inclusion, accessibility, and community. Malissa has two family members diagnosed with FD/MAS, a teen cousin and daughter in-law. She is thrilled for the opportunity to join the FD/MAS Alliance Board.
Lauren Ruotolo is an accomplished author, inspirational speaker, and content marketing leader for many global brands. Lauren served as FD/MAS Alliance Board President from 2017 -2021. She was born with McCune-Albright syndrome, a rare genetic condition that affects the bones, causing her to walk with crutches. Lauren views her condition as a form of empowerment and uses it to lead an amazing life. She has since won multiple achievement awards in marketing and female empowerment, published her book “Unstoppable in Stilettos” and started her shoe brand called Unstoppable Shoes. She now looks to inspire others to overcome their challenges and start leading an amazing life, a life truly worth living. Learn more at www.LaurenRuotolo.net.
Nicola Deeley or Nikki was first diagnosed with fibrous dysplasia (FD) in her skull at age 16 after suffering from chronic pain since she was 13 years old. Nikki continues to have chronic pain. She is determined to raise more awareness and help provide more FD/MAS research funding. Nikki says, “as a Research and Development Scientist myself, with a degree in Medicinal Chemistry and Pharmacology, I understand how little funding is available for rare diseases and therefore this campaign is very important. I also think the awareness and support brought by FD/MAS Alliance are very important as patients and caregivers often feel isolated and alone.”
Justin Healy is the co-owner and broker of Ocean Atlantic Sotheby’s International Realty. Justin has been involved in the sales, development, and/ or acquisitions of over $4 billion dollars of real estate in Delaware. When not working, Justin loves spending time with his wife, Sarah, and their three boys. Their son, Tyler, was diagnosed with FD eight years ago. Justin and Sarah, former FD/MAS Alliance Board Director, are passionate about helping FD/MAS Alliance advance research. Justin says, “we know our children are watching us try and make a difference – and THAT matters.”
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.
Leslie Martin, a business owner and lover of all things beauty, has worked in the beauty industry for over 15 years. Her work has been published and televised worldwide. Leslie noticed that her daughter Malajisa at age 4, ran funny. Leslie brought the issue up with Malajisa’s doctor at a regular check-up, and after many tests, Malajisa had a fibrous dysplasia (FD) diagnosis. Malajisa broke her femur at age 10. Now, Malajisa is in college, and Leslie plans to advocate as a Board Director. Leslie says, “You all are amazing, and I see you pushing through and putting in the work. Stay strong, beautiful people; help is on the way.”
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.
Gary Pollastro has watched and learned about FD/MAS through his daughter, Joelle, who was diagnosed eleven years ago and graduated from the University of WA in the School of Aquatic and Fishery Sciences. Gary lives on Mercer Island, WA, a suburb of Seattle, and is married with two daughters and a bernedoodle. In addition, he is a small business owner with extensive sales and marketing experience. He looks forward to becoming more involved with the FD/MAS Alliance and hopes to help make a difference for this community.
Carmel Shemmesh-Rafalowsky works as a Business Development Specialist for a clinical trial SaaS company. Diagnosed as a young child with MAS, she found out she had FD the hard way, when it impacted her vision at age 16. Propelled by her experiences growing up with a rare disease, she studied Biology at the New Jersey Institute of Technology. Since graduating, Carmel has found passion and purpose in advocacy work and she is excited to have a more active role in the FD/MAS community. She currently resides in Lancaster County, PA with her fiancé, cat, and an extensive mug collection.
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. As acting chair of the Scientific Advisory Council, Dr. Collins participates in board meetings in a nonvoting capacity.
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.
Charles Harles, JD
Charles Harles, JD, was our founder and friend. The entire fibrous dysplasia and McCune-Albright syndrome community mourns 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 FD/MAS Alliance 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 dba FD/MAS Alliance. 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.