FDMAS Alliance

It's time for on the 20th of every month (because the genetic mutation that results in FD and MAS is found on the 20th chromosome). This month we're especially pleased to share a community member from Germany!

Julia is the mother of a daughter living with FD/MAS! She has helped us to translate the facts into German! Danke!!!

! Coming to us from Brazil!

Hi! My name is Beatriz Kaori Miyakoshi Lopes (), 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!

and we're super excited to share our newest addition!

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.)

We are sending it up for all those in our community who are recovering from surgery or making decisions about surgery! Don't forget to check the Treatment guidelines alongside your medical team as you make your decisions!

With on the mind, we're resharing this blog post from FD/MAS Alliance Board President Anne Corvelle with her tips on how to talk to other adults (teachers, coaches, etc) about your child's FD/MAS diagnosis!

Would a meet-up be useful for other caregivers out there? Let us know!

https://fdmasalliance.org/caregiverexplainsfdmas/

It's ! When I say these folks are busy, I mean BUSY! Check it out:

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 andadvocating for all of us!

Who else is visiting colleges this summer? You met Tyler earlier this week in our series. Tyler sent us this pic of him, his mom, and researcher and awardee Dr. Charles Hoffman at Boston College! It's sort of the perfect picture of us and what we do: community, collaboration, education, research! We're so grateful to all those who make FD/MAS Alliance and this community stronger!

! You know this one from FD/MAS Global Awareness Week this past year, but if you missed his discussion of staying active with FD/MAS, stay tuned for more as he works with the PAC!

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. I joined the PAC in 2024.

If you got to (had to?) compete in one event in the Olympics - what would your event be?

Fun fact: The first Paralympic games were organized for wheel-chair bound WWII vets who competed in archery. This year there are 22 different events in the Paralympics for all kinds of athletes!

Not everyone in the FD/MAS community uses a wheelchair, but it's always encouraging to see opportunities open up to a wider audience and to see ourselves reflected in the best of the best!

Just a quick reminder that you can find all our past educational webinars AND research articles about FD/MAS treatment (as well as the FD/MAS treatment guidelines) all on our website! Reach out to us if you have questions. We always do our best to answer or connect you with someone who knows more!

! Did you think we forgot??! This week, it's the ever smiling Jennifer Curry!

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 syndrome. 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 diagnosed 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.

Did you know we maintain a database of doctors who have experience with FD/MAS? This list is made of YOUR recommendations and can be searched by location! It's only as good as the intel we have from you, so if you have a great endocrinologist, orthopedist, dentist, or primary care doc, let us know about them!

https://fdmasalliance.org/patients/physician-database/

NOTHING beats getting together in person, but it's not always possible to meet face to face! We're in the process of planning some community virtual meet-ups wit some focus-topics. What would you like to get together and talk about?

It's Monday--time to

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 an online support group FDMAS 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.

Recognising 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 [email protected] or connect on social media . I look forward to connecting with and supporting our community

It's Monday, so let's !

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!

Did you see Pelemo's interview on the HumAngle? The way she speaks about and how the system can sometimes "blame" the illness on the patient really hit us! It's so important to hear others tell their stories and to see our own experience reflected back! Thank you, Pel, for sharing and to HumAngle for capturing this story!!

Living With Fibrous Dysplasia Living with is challenging, especially as there is no direct cure. In this video, we sit with Pel, who shares the socio-economic and psycho...

Happy Independence day to our community in the US of A!

Do we still say ?! Because that's how we FEEL!

We've added 6 new members to our unbelievably awesome Patient Advisory Council (PAC)! Learn about them (and the wonderful folks they are joining) here: https://fdmasalliance.org/2024-meet-the-pac/

Rabbit, Rabbit! It's July, and FD/MAS Alliance is headed to the MAGIC Foundation conference later this month. Tovah, our Community Engagement Director, and her son Iddo (Assistant Snack Eater) will be there! Will you? Let's say hi! You can ALWAYS reach out to us via DM or through our email ([email protected]) too!

If you came to the NIH symposium commemorating 25 years of research, then you already saw this. We're so proud of our work with Dr. Alison Boyce and her whole team at National Institutes of Health (NIH)!

Cracking Down on a Rare Bone Disorder NIDCR pediatric endocrinologist Alison Boyce is investigating better ways to treat and diagnose patients with Fibrous Dysplasia/McCune Albright Syndrome (FD/...

WOW WOW WOW! This community is AWESOME! We came to you asking to help us get to two research grants, and we are SO thrilled to share that, thanks to you, we can fund as many as THREE research grants in 2024!!!

To and ALL those in our community who supported THANK YOU!!!

Any gifts we receive now will go towards 2025 research initiatives!

We are SOO grateful to Association MAS/FD for their tremendous support of Team FD/MAS and FD/MAS research!

FD/MAS is a complicated disease that touches so many aspects of the lives of those who suffer with it. That’s why the FD/MAS Registry takes such an extensive look at your experience with the disease. As you work on your surveys, know that you can always save your progress and come back later to complete and submit a survey!

www.fdmasregistry.org

TODAY is the last day for 2024 research fundraising! If you want to see better treatment options and outcomes, this is the most direct path we have! Every gift counts!

With SO much gratitude for those who have already given, to for this incredible opportunity to advance research, and to all the researchers who dedicate their time and talent on studying

www.tinyurl.com/teamfdmas2024