Meet the PAC!
In July 2022, FD/MAS Alliance launched our inaugural Patient Advisory Council, a group of community advisors and organizational ambassadors for the FD/MAS Alliance. Without the trust, respect, support, and engagement of the FD/MAS community, our work cannot be successful. The community members who stepped forward to form this first class of ambassadors represent some of the most dedicated, dynamic, and inspiring people we have had the pleasure to work alongside, and we’re thrilled to introduce them to you now:
The Inaugural Patient Advisory Council:
My name is Brittany Anderson, I live in Avon, Indiana, and I am 38 years old. I was diagnosed with FD in my left jaw at 13 and diagnosed with MAS when I was 15. I have bone lesions throughout the left side of my face and skull. I have four other rare diagnoses besides FD/MAS, all caused by my FD/MAS. I have had 13 surgeries so far, three near my brain and ten on my face and eye. I am a legislative advocate and use my voice to work to help call for needed changes.
My name is Andra, and I moved to Vancouver, Canada, when I was almost 18 years old, seeking better care and treatment for acromegaly and FD/MAS. I was very privileged to be able to move continents (from Europe to North America) in search of better care, and it’s something that I’ll always be grateful to my parents for. My story is not unique because, as we now know, people with a rare disease often have to relocate closer to better medical resources.
I never realized the value of having FD/MAS until I stopped taking it for granted, and that was in my mid-20s, long after my mom had stopped managing my doctor’s appointments. When I looked up close, I discovered that it had shaped some of the best parts of me — it was behind my love for meditation, design, and targeted nutrition. It also fueled my openness to experience, despite sometimes not being able to get out of bed or off the floor. FD/MAS is a true blessing in disguise.
Hi 👋 I’m Nikki Deeley (@nikkideeley), and I am an FD/MAS warrior! I am a medical device research and development scientist with a background in medicinal chemistry and pharmacology. I’m passionate about the research that the FD/MAS Alliance funds, and I hope we can continue to raise more money to continue our mission.
I was first diagnosed with FD in my skull at 16 years old and have suffered from chronic pain for the past 12 years. I have been a charity advocate for the past year and a half, and I hope within my new role, I can continue to raise awareness, engage with the community and help to create an open and safe space.
Hello! My name is Bethany Hammond. I am 32 years old and live in Rockport, TX, with my husband of five years. I have my Masters of Science in Agriculture Science and worked as a county extension agent until recently due to my health. I enjoy baking, fishing, traveling, and spending time with my two dogs, Nylah and Wally.
I’m Shelley Hebert. I am 55 years old, and I was diagnosed at age four with McCune-Albright syndrome and polyostotic fibrous dysplasia.
I made a major life change a year and a half ago and moved from Wisconsin to Florida. I am living my best life! I’ve always lived life to its fullest.
Here are some of my proudest moments: graduating college, president of my student government with a bachelor’s degree in business administration and computers; passionately involved political activist; getting married, working in philanthropy, becoming a mother, and being fortunate enough to work in the travel industry, the real estate industry, and traveling as much as I could along the way.
I am fiercely independent in every way (with support from loving family and friends as needed💕). I am not my disease.
Hola 👋 My name is Genesis Medrano, and I’m an FD warrior ⚔️ as well as one of the new members of the Patient Advisory Council. I was born in the Dominican Republic and live in Ohio with my family and my four-year-old. I am currently a psychology student and hope to assist as a counselor one day to those who suffer from chronic pain.
I was diagnosed with FD in my hip at 12 years old (I had my first surgery on my 13th birthday 🥳), and since then, I’ve had four additional surgeries on my right hip (the most recent in December of 2021). Unfortunately, I’ve lived with chronic pain for the last 13 years, but I’ve still been able to pick up some hobbies. I love working out, painting, coordinating photography productions, working with children, helping others, and fashion. I’ve been a volunteer before in other organizations, but I’m thankful I found this one, and I am now a part of it since I can relate to others. I honestly hope to be of help in any way I can to advocate for the organization.
Hello! I’m Sarah Mumper, and I was diagnosed with McCune-Albright syndrome at about two years old. From a young age, my parents treated me like my two older siblings, with some minor differences to accommodate obstacles that would come up due to my condition.
I’m now 26 years old and living life to the absolute fullest. I have a full-time job as an admin assistant to two assistant principals at a high school, and I am a consultant on the side, assisting in marketing and social media. I still am passionate about my art and use this as my outlet on my toughest days. I love working with new families and putting them at ease when faced with an initial diagnosis. I enjoy spending time with my friends, family, and my boyfriend of 4 years & his family.
Don’t hesitate to connect with me on the socials! Looking forward to meeting all of you!
Hi! I’m Carmel, and though you probably can’t tell from the photos, #ThisismyFDMAS. Though I’ve known I had FD/MAS since I was a child, I’ve only started disclosing/talking about it openly in the last few years. It can be scary to be vulnerable and to talk about it, but I think it’s important to share facts, raise awareness, and build our community. I’m so excited to be part of the PAC for that reason! It’s a privilege to be part of this initiative with the FDMAS Alliance, and I can’t wait to get to work!
My name is William Romero, and I am so excited to be a part of the FD/MAS Alliance Patient Advisory Council. I was diagnosed with fibrous dysplasia when I was four years old, and I have been an advocate for much of my young adult years. I’m currently attending Vanderbilt University, majoring in political science and religious studies. The FD/MAS Alliance has been an incredible resource for my family and me, and I look forward to this new advisory role.
My name is Olga Sanchez de la Vega. I am 44 years old and from Encinitas, California. I was diagnosed with fibrous dysplasia of the skull two years after my daughter was born. Before then, I did not know anything about it. All I knew was that I was not at my best, and I searched for answers. Thankfully, I found out what had been slowing me down, and I took charge to do anything in my power to be ready for myself and, more importantly, my children. Since, I have been focused on mindfulness, a healthy lifestyle, listening to my team of experts, finding roles and jobs that I can manage, and helping raise awareness. I know the road ahead is bright. I am thankful to be part of this team.