Fibrous Dysplasia Foundation Welcomes New Board Members

The Board of Directors of the Fibrous Dysplasia Foundation has grown to include five new board members.

Acting President Amanda Konradi is very pleased with the skills of the new board members: “The new board members are extremely talented and qualified, in a number of areas of expertise. We have individuals joining us with legal expertise, marketing experience, valuable fundraising experience, and international connections. As before, we’ve maintained a board who are personally connected to these diseases, through their experiences as patients, parents or clinicians.”

The new board members are Kelly Cohen of Lake Forest, Illinois, Rod Ellis of Atlanta, Georgia, Catherine Fairchild of Baton Rouge, Louisiana, Kiran Murty of Princeton, New Jersey and Lauren Ruotolo of New York, NY.

Many of the new board members stood out as excellent candidates because of their history of service to the community, their professional background, and their ability to contribute to realizing the Fibrous Dysplasia Foundation’s goals for the future.

Kelly Cohen, a Pediatric ICU nurse at the time her 5-month-old son Liam was diagnosed with McCune-Albright Syndrome, is passionate about raising funds for research to treat and cure fibrous dysplasia. She is also talented at raising awareness and developing new partnerships, as she did recently when Liam, now three years old,  captured the attention of the Lake Forest Police Department.

Rod Ellis

Rod Ellis

As the parent of a middle-school aged girl with MAS, Rod Ellis is also passionate about supporting research into FD/MAS, as well as improving education and awareness for families affected by FD/MAS. Originally from the United Kingdom, and a frequent cross-continental traveler, Rod brings a unique perspective and ability to help strengthen our international partnerships.

Catherine Fairchild

Catherine Fairchild

Catherine Fairchild, JD, returned to the board, having served a number of successful previous terms during the 2000’s. Catherine is the parent of a teenage son with MAS, whom she admires for his gracious and charming personality, and a bit of a wicked wit. Catherine brings valuable legal expertise and fundraising experience.

Kiran Murty

Kiran Murty

Kiran Murty is the parent of a son with fibrous dysplasia. Kiran holds a masters degree from Columbia University in Technology and Management, and had held many senior roles on technology teams in healthcare and financial services verticals. Kiran is well-positioned to help the Foundation take advantages of the new research and treatment opportunities related to health information technology. In addition to his background in technology, Kiran was a successful fundraiser in the 2015 Million Dollar Bike Ride.

Lauren Ruotolo's book, "Unstoppable in Stilettos"

Lauren Ruotolo’s book, “Unstoppable in Stilettos”

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 overseeing strategic marketing, public relations and social media outreach. Ruotolo’s first-person essay “Get Shorty,” which shared her philosophies on living with the rare genetic disorder McCune-Albright syndrome, was published in Marie Claire magazine in 2009, and was one of the most-responded to articles in the magazine. Soon after, Ruotolo penned her first book titled “Unstoppable in Stilettos—A girls guide to living tall in a small world.” In the book, Ruotolo discusses her struggles and achievements growing up as a disabled person, plus offers her advice on life known as “Lauren Lesson’s” on how to achieve everything you want in life even when life throws you lemons. Lauren’s rich background in marketing is expected to be invaluable in developing strategic partnerships with mainstream organizations, and bringing the Foundation’s awareness raising strategy to the next level. Lauren also was a fundraiser in the 2015 Million Dollar Bike Ride.

Executive Director Deanna Portero indicated that she is thrilled with the new board members, saying, “The new board members have brought additional enthusiasm, drive, focus and talents to the organization. Enlisting their efforts represents a huge gain for the organization, and the community.”

The Fibrous Dysplasia Foundation expects to recruit additional board members later this year, and will share more information on the application later in the year through our newsletter. If you think you might be a good candidate for a board member, or know of an exceptional candidate, we welcome emails to in advance. If you think you might be interested, we highly recommend volunteering on one or more projects to learn more about working with the Fibrous Dysplasia Foundation before applying to join the Board of Directors. You can find out more about opportunities to get involved by emailing us, or visiting out Get Involved page.

For a full listing of our Board of Director’s, please visit our Leadership page.