Our Team

Tovah Burstein, MFA, is our Executive 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.

Lori Butterfield, Program Coordinator, has 25 years of experience in the nonprofit sector, where she has worked at a variety of medical advocacy and research organizations. Most recently, she has focused on developing patient support, education, and advocacy programs for a national foundation partnering with patients, caregivers, and healthcare providers to strengthen engagement and improve the patient experience.

Passionate about building community, Lori believes that patient-centered strategies are essential to advancing our mission. Building on the success of our Community Meet Ups, Lori looks forward to creating even more opportunities for individuals and families affected by FD/MAS to connect, share experiences, and learn from one another.

Kristin has spent over a decade working in finance and administration, with experience in both the for-profit and not-for-profit sectors. She is committed to fostering financial integrity, operational efficiency, and a supportive workplace culture. Kristin has worked closely with executive teams and boards to ensure transparency and alignment with organizational goals, while also managing budgets, grant compliance, and HR functions. She values opportunities to contribute to sustainable growth and mission-driven outcomes and finds fulfillment in supporting teams and communities through her work.

Outside of work, Kristin loves the chaos and joy of life with her husband and their four kids. When the house finally quiets down, you’ll find her staying up way too late devouring books. Last year, she tore through 70 reads—and she’s always ready to add to her never-ending “to-be-read” pile.

Anne Corvelle is the current Board President of the FD/MAS Alliance and a parent of a  daughter with MAS/PFD. Anne has spent 15 years working in non-profit organizations in  Lancaster County, PA. She currently works in development at the independent school where her children attend. She has been involved with the Alliance since 2017 and has served on the board of directors since 2020. Ever since her youngest daughter was diagnosed in  2016, Anne has been on a mission to bring attention to FD/MAS and drive research forward in the hopes of there one day being a treatment or cure for everyone affected by these diseases.  

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.”

Chris Guest lives in Bonney Lake, Washington with his wife and daughter, Jordyn, who was diagnosed with McCune-Albright syndrome in June of 2022. Chris works in public infrastructure, specifically in water and wastewater infrastructure, and brings experience with grant writing and government systems to his work with the FD/MAS Alliance board. Discovering the FD/MAS Alliance was important for his family, as was seeing stories from others living with FD/MAS and spending time learning the stories of those affected by FD/MAS has ignited a passion to contribute to this community. Chris was elected Treasurer in June 2023.

Malissa Kenney has spent over 25 years working in the non-profit disabilities work sector, 20 of which were 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 a daughter-in-law. She is thrilled about the opportunity to join the FD/MAS Alliance Board.

Diagnosed with fibrous dysplasia at age 6, Camryn underwent over 20 surgical procedures by her teenage years. After a pivotal conversation at age 15, when a doctor at the National Institutes of Health took the time to explain the science behind Camryn’s FD diagnosis and treatment, she set on a path toward research. Camryn is a postdoctoral research fellow in the Department of Anesthesiology, Critical Care and Pain Medicine at Boston Children’s Hospital and Harvard Medical School, where she studies the biopsychosocial mechanisms of pain in FD/MAS. She has served on our Patient Advisory Council since 2024, and brings her patient-scientist perspective to her advocacy on behalf of our community.

Bio forthcoming

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.

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.”

Dr. Eric Liao is the founding director of the Center for Craniofacial Innovation at the Children’s Hospital of Philadelphia (CHOP) and a pediatric plastic surgeon-scientist dedicated to advancing care for patients with craniofacial conditions. As vice chair of Academic Affairs in the Department of Surgery, Dr. Liao mentors trainees and faculty while driving impactful academic initiatives. His clinical expertise focuses on caring for patients with orofacial clefts and complex craniofacial anomalies, complemented by groundbreaking research leveraging zebrafish models to elucidate the genetic basis of craniofacial disorders. Before joining CHOP, Dr. Liao held leadership roles at Harvard Medical School, Massachusetts General Hospital, and Shriners Children’s Boston. With over $15 million in research funding and numerous prestigious awards, Dr. Liao’s work bridges surgical innovation and genetic discovery, aiming to transform treatment paradigms and improve patient outcomes worldwide. A graduate of Stanford University and Harvard Medical School/MIT, Dr. Liao is board-certified by the American Board of Plastic Surgery.

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.

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, 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, 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, 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.

Kelly Cohen’s connection to FD/MAS began with the birth of her second child, Liam who was diagnosed as a newborn. She calls upon her experience and training as a nurse to advocate for her son and others with FD/MAS. Kelly continues to work closely with Alliance leadership to advise the organization. Her support has been instrumental in advancing FD/MAS research and keeping FD/MAS Alliance at the ready for any and all opportunities.

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.