The CRMO Foundation was created by a group of active and engaged parents of children suffering from CRMO. These parents saw firsthand the needs of their own children and the needs of the CRMO community in general, and they felt compelled to do something to meet those needs. They understood that two of many large obstacles to overcome are the difficulty of diagnosing and the lack of information about this very rare disease.
⇒ Researchers need funding to generate data
⇒ Physicians need research and education to properly diagnose and treat the disease
⇒ Patients and families need a connection to current research and the community
We envision this foundation as a place to bring all of these groups together, ensuring a successful future with an actively engaged research community leading to therapeutic advances and access to information, resulting in better treatments and an overall better quality of life for those living with CRMO.
Meet the Board
The mission of the CRMO Foundation is to support and improve the health and well-being of Chronic Recurrent Multifocal Osteomyelitis (CRMO) patients and their families by furthering the efforts of life-changing research, increasing access to resources and education and promoting awareness of the disease.
Sarah Theos has over 17 years of experience working in the biotechnology industry. She is currently a Sr. Scientific Consultant for Promega Corporation in the Washington, DC metropolitan area. Sarah earned her Bachelor’s degree in Biology from Virginia Tech and her M.S. in Biotechnology from Johns Hopkins University. Due to her scientific background and professional network, including industry and federal institute contacts, and direct connection to CRMO, she is deeply motivated to find answers for those suffering from the disease. As the Executive Director, she will use her scientific expertise to help create a robust research network, fundraise, and support the overall work of the Board.
Libby is a powerful advocate for patients and families suffering with CRMO/CNO. She successfully leads the highly active Facebook support group page that provides a network of support for thousands of patients and families. She has partnered with leading physicians and researchers to increase the accessibility of accurate educational resources and current research, as well as bridging a strong working relationship between researchers and the CRMO/CNO community. Through the CRMO Foundation, she provides administrative support and direction, while remaining keenly focused on the important and personal work of advocating for CRMO/CNO patients and families.
Sherri has a track record of non-profit CRMO community engagement, advocacy and outreach, and has vast administrative and organizational experience. She has over 26 years of experience working as a staff manager in the corporate legal industry. Sherri, along with her daughter affected by CRMO, are co-founders of a non-profit, Kaila’s Komfort, which supports families living with CRMO. She has a good understanding of non-profit policy, documentation, legal requirements and compliance, all of which she will be responsible for in her role as Secretary and Treasurer. Both of her children suffer from different rare diseases, making her an active advocate in both of these rare disease communities.
Chief Scientific Officer
Alex Theos is an Associate Professor and Cell Biologist at Georgetown University. He earned his Doctorate from the University of Cambridge, Department of Clinical Biochemistry and completed his Postdoctoral training at the University of Pennsylvania. His extensive experience as a researcher and educator who has received foundation grants to support his work will serve him well as Chief Scientific Officer, performing a leadership role in developing and directing the scientific research goals of the CRMO Foundation. Sarah and Alex are motivated by the bravery and resilience of their beautiful boy to work tirelessly to help him and others challenged by this rare disease.
Director of IT
Christy brings a wealth of experience in IT and web design aimed at raising awareness of CRMO. She created and maintains crmoawareness.org and has been instrumental in the creation of the crmofoundation.org website. Christy has a Bachelor’s degree in Computer Information Systems and has been in the industry for nearly 25 years. Christy is an entrepreneur, who owns a computer repair business in Colorado. Her experience will transfer into her role as Director of IT for the organization. Christy will continue maintaining the Foundation’s website and begin to foster growth in fundraising activities so the organization can begin to fund research towards better treatments and a better understanding of CRMO/CNO.
The CRMO Foundation is a non-profit corporation 501(c)(3). It was organized exclusively for charitable, educational, and scientific purposes.