The Fibrous Dysplasia Foundation (FDF) was founded by patients and caregivers who cared deeply about improving the lives of people living with FD/MAS. This year the Foundation continued that tradition by adding five new board members with teeming passions and personal connections to the FD/MAS community. Their gifts and experiences will bring great value to the organization help us push further in our fight against FD/MAS!
Kathy Crews is a patient with polystotic FD. Kathy has over 35 years of experience in upper management in two international businesses and one regional to the Midwest in conjunction with over 15 years in hospice. Kathy is interested in improving patient care for FD/MAS patients especially in the Midwest and addressing the concerns of the newly diagnosed. “Proper education of our disease in many cases is lacking. We have to ask physicians to ‘google’ it and that just doesn’t cut it, especially for parents of young patients,” said Kathy. Now disabled from FD, Kathy keeps busy with her husband and four grown children. We’re thrilled to have her join the board.
Many of you already know Dr. Lynn Lindaman from previous Patient and Family conferences. Lynn is a pediatric orthopedic surgeon living in West Des Moines, Iowa. Being a fibrous dysplasia patient was one of many reasons that he was eventually drawn to medicine, and specifically orthopaedic surgery. “As a fibrous dysplasia patient back in the 1950s, and progressing up into the 21st Century as a patient and as a surgeon treating other FD patients has allowed me to observe, and experience, the evolution of the understanding of FD and its treatment,” said Lynn. He will bring both his professional expertise and personal experience to help guide the Foundation.
We also have several parents joining the board, including our first director from Canada. Many will be familiar with Jocelyn Pederson from her advocacy and awareness building through Rylan’s Rhythms. Her kind and musically talented son Rylan has MAS and PFD. Rylan showed a great interest in raising awareness about FD/MAS. He uses his love of music, his talent playing guitar and writing songs to share his experience and bring hope. Jocelyn supports and nurtures her son’s passion for making a difference. “As a parent, I will do anything and everything to change the lives of people who suffer from this disease,” said Jocelyn.
Joyce Ellis is another FD/MAS parent who has joined the board. Joyce lives in Atlanta, Georgia with her husband and three teenage children. Her MAS daughter is a bright, energetic and very resilient young lady who, like any teenager, loves life as it comes. “My daughter’s positive attitude in life gives me a deep appreciation and passion for raising funds for research to treat and cure FD and MAS,” says Joyce. Leadership runs in the family; Joyce’s husband Rod Ellis served on the FDF Board of Directors for several years.
Sarah Healy joins the FDF with over 15 years of public relations, sales and event planning experience. Beginning her career in event planning at the Philadelphia Chamber of Commerce, Sarah went on to work for institutions such as 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 patients like her son and build a future with better options for FD and MAS patients everywhere.
These faces are new to the FDF Board, but they are not new to the FD/MAS community. Those of you who know Lynn, Sarah, Kathy, Joyce, and Jocelyn will understand how thrilled we are to be fighting FD/MAS alongside them. The Board of Directors sets the FDF’s vision for success and guides the organization towards our goals. The passion, talent, and dedication of these new Board members guarantees that the Foundation will continue an ambitious course towards a treatment, a cure, and a better future for all people with FD/MAS.