Meet the 2024 Patient Advisory Council
We’re so proud to introduce our 2024 Patient Advisory Council, a group of community advisors and organizational ambassadors for the FD/MAS Alliance. In the last two years, the Patient Advisory Council has hosted numerous community socials and learning opportunities and spearheaded the incredible #FacesofFDMAS video initiative. Their guidance behind the scenes has been steady and inspiring. Without the trust, respect, support, and engagement of the FD/MAS community, our work cannot be successful. Already, this group of advocates has introduced some exciting ideas for the years ahead, and we’re thrilled to introduce them to you to our new members now:
Meet the 2024 PAC
Hi, my name is Camryn Berry! I live in Massachusetts with my partner and our two (feline) children, Obi and Binks. If you can’t tell, I’m a big Star Wars fan! I also love to make art in any and all forms: drawing, painting, knitting, decorating cakes, and designing tattoos!
I was diagnosed with fibrous dysplasia at age 6 and have spent the 18 years since learning to advocate for myself and our FD/MAS family in some pretty exciting ways; I am currently a Ph.D. candidate researching pain in FD with the Upadhyay Lab at Boston Children’s Hospital. I am thrilled to be joining the Patient Advisory Council to further the synergy between the research and patient/caregiver communities!
My name is Amanda Coldiron and I was diagnosed with Fibrous Dysplasia in my skull when I was ten years old. My first craniotomy was at eleven which left me blind in my right eye. I have had four craniotomies in the last seven years. I struggle with balance, severe cluster headaches, and ongoing severe sinus infections. I’m also at risk for serious illness after CFS leaks and repairs. I have had an amazing team of neurologists, neurosurgeons, ENT, and vision specialists for the majority of my life that have been great partners on this journey. As an adult, I have learned the significance of having a rare disease and most importantly, how to advocate for myself. I live in Oklahoma and have an amazing career as the director of a nonprofit, married to the love of my life with 6 great kids and enjoy any free time I can get! Utilizing and depending on FD/MAS Alliance for support and resources has been a pivotal part of
living with this disease and helping my providers learn more about Fibrous Dysplasia. I am excited to be a part of PAC and look forward to continuing to bring awareness and
advocating for all of us!
Hello! I’m Laura Cowell, from Australia and I was diagnosed with fibrous dysplasia by accident in early 2021. Over my 42 years, I have navigated a myriad of health challenges, from headaches and hearing loss to central nervous system issues, breast lumps, fatty liver, skin problems, uterus/ovary complications, and gastrointestinal troubles. Each issue was tackled individually until a prolonged period of headaches, unusual facial sensations, body shakes, and bone growths in my gums and skull led me to seek further medical advice.
Despite initial recommendations for antibiotics, my persistence led to a CT scan that revealed the true extent of my condition. The diagnosis journey was fraught with stress and uncertainty, as even seasoned medical professionals were unfamiliar with fibrous dysplasia/McCune-Albright Syndrome. My quest for answers took me to a neurosurgeon, whose reliance on Google underscored the rarity of my condition. Multiple tests, including a full-body bone scan, CT scan, and MRI, culminated in a plan that offered little in terms of immediate solutions.
Feeling disheartened by the ‘wait and see’ approach, I turned to FD/MAS Alliance. A pivotal recommendation from a fellow member led me to Dr. Kathryn Benson, an endocrinologist with experience in FD/MAS. Dr. Benson’s comprehensive care and management strategy transformed my journey, underscoring the importance of having the right specialist.
Recognizing the need for better support and clearer pathways from diagnosis to care, I founded Fibrous Dysplasia/McCune Albright Syndrome Australia Ltd. My goal is to raise awareness, improve support systems, and establish effective care pathways for people living with FD/MAS, ensuring everyone can live their best lives.
Please feel free to reach out to me at laura@lauracowell.com or connect on social media @FDMASAUSTRALIA. I look forward to connecting with and supporting our community
Hello Everyone!! My name is Jennifer Curry and I am 51 years old. My story begins at the age of 5 when I fell off a Big Wheel and broke my femur. At that time I was diagnosed with fibrous dysplasia. Over the years, the diagnosis changed to polyostotic FD with McCune-Albright syndome. There were multiple fractures in my right femur/hip, one in my left femur, a collapse of the right ankle, and multiple right rib fractures. Most recently, a large skull tumor was also diagnosed as FD and I was diagnosis with agromegaly. All of the above fractures and issues were addressed with surgery! With God’s awesome divine intervention, I’ve been introduced to a whole team of specialists who are countering the FD and Agromegaly! There is hope. On another side of my life, I’m happily married to my husband. We have a brilliant yet challenging 12-year-old daughter who loves sports, especially softball. I did have the opportunity to become a nurse, a career that I so loved. I am now retired and loving that as well. I’m also a new member of the PAC and am very excited about taking on this endeavor.
Hey I’m Tyler Healy. I’m 17 years old and was diagnosed with FD/MAS when I was 7 years old. Although being diagnosed was tough at first, I saw it as a silver lining to find non-contact sports that benefit me like open water swimming and golf. I’m excited to make a positive impact on patients who were diagnosed with FD/MAS.
My name is Tadhg and I’m a 23-year-old Sociology major from Alberta, Canada. I was diagnosed with polyostotic fibrous dysplasia only a few years ago when I very suddenly began experiencing chronic pain.
Since then, I continue to deal with further developing complications and have had experience working with multiple specialists. Due to a lack of knowledge about my condition I’ve had to create my own care team and navigate the healthcare system largely on my own. This has made me extremely passionate about bettering the healthcare system and creating and distributing resources for others in the same boat.
This led me to joining the Patient Advisory Council. I feel very fortunate to be a part of such a hardworking community and I look forward to helping others navigate their health journeys.)
Hi! My name is Beatriz Kaori Miyakoshi Lopes (@biakaorimi), I’m a 29-year-old Brazilian. I research accessibility infrastructure, and population aging (which I did my Masters on) while working with marketing. I was diagnosed with FD/MAS when I was 4 years old, checking all the boxes (bones, endocrine system, and skin). My entire left side is affected by FD and I like to joke that I am quite tall – for a hobbit! It was a difficult journey for my family and I but I’m happily living with a lot of health, independence and zest for life.
I have a never-ending list of to-dos, to read and to watch and it just keeps growing. I’m so happy and honored to be the first LATAM patient advocate and I hope to be able to help in every way I can, bridging the gap between English and Portuguese-speaking patients and researchers. Don’t hesitate to get in touch!
My name is Hrithik Yarlagadda, I’m from Charlotte, North Carolina and I’m a sophomore in high school. I was first diagnosed with fibrous dysplasia in my left femur and tibia in 2015 when I was 6 years old. These last 11 years have been filled with struggles and learning how to deal with this disease. What helped me the most during this time was the FD/MAS alliance and their support and available knowledge. Through their support I was able to find myself and learn how to thrive even with Fibrous Dysplasia. My goal as a member of the PAC is to be involved with the community and help anywhere and anyone I can so others can get the same help and support I received.
These wonderful advocates will join the existing team of PAC that have already given so much to this community. Over the course of the next year, these advisors will help determine the stories we tell, programs we create, and initiatives we take on. Our work has already improved because of their suggestions and insights, and we are beyond grateful for their service.