Kelly Cohen – a Mother, a Nurse, and a Champion for FD/MAS
Kelly’s connection to the FD/MAS began with the birth of her second child, Liam who entered the world at just 4 pounds and began to lose weight instead of gaining it. Although she no longer works professionally as a nurse, she uses her training, skills, and dedication to advocate for her son and others with FD/MAS. She and her family are also long-time donors to the FD/MAS Alliance who are dedicated to raising funds to advance our shared mission.
“Today Liam is doing great. I emphasize ‘today’ because as people who deal with FD/MAS know, his situation can change at the drop of a dime. Every time I think about going back to work something happens and we have to fly out to see specialists. Unless you’re living in a few major cities, there’s no central place to get care for FD/MAS.”
Kelly sees funding the FD/MAS Alliance as an effective organizing presence that amplifies patient voices and pushes for clinical care and scientific progress. Kelly’s passion for research and her son’s well-being led her to seek out organizations dedicated to the rare disease. At first she thought she would need to start her own organization, but she eventually found the FD/MAS Alliance (then called the Fibrous Dysplasia Foundation).
“We knew that research and fundraising were critical and someone needed to get the ball rolling. So, instead of starting something from scratch, we decided to invest in the organization.”
With a brother who battled Cystic Fibrosis (CF), Kelly believes in the value of research and community support that the FD/MAS Alliance provides. She sees parallels in how the treatment of CF has transformed lives in the past 30 years and has high hopes for FDMAS.
“With new treatments, CF patients no longer have to suffer in the way they did a few decades ago. That’s what we’re going to do with FD/MAS.”
For those who feel their resources are limited or feel daunted by the idea of fundraising, she admits that fundraising is hard, but that fundraising connects people with their community and empowers them to help move the needle on research and treatment.
“People want to help, they just don’t know how. Your story and your belief in change for the better hold power. Knowing that the funds are going to the right place helps people feel good about donating.”