I am writing this to express my gratitude and appreciation for a very professional non profit organization that has been supporting me and my daughter Rital. Rital is 12 years old and she has FD/MAS, a rare and complex disease that affects the bones and endocrine system. When I first learned about her condition, I felt lost and hopeless. I visited many doctors in Cairo, Egypt, but none of them knew much about this disease or how to treat it. I felt like I had no one to turn to for help or guidance. Then, three years ago, I discovered this organization on Facebook and joined their online community. Since then, I have received so much information, advice, and encouragement from them. They always check on Rital's progress and update me on the latest research and treatments. They have become like a family to me, a family that understands what I am going through and cares about my daughter's well-being. They have given me hope and strength to face this challenge. I want to thank them from the bottom of my heart for their hard work and dedication to help people with FD/MAS.
I'm proud to part of TEAM FD/MAS! The Million Dollar Bike Ride is an awesome event for a great cause.
I look forward to riding again in 2024 to support TEAM FD/MAS and the FDMAS Alliance.
My son is affected with Fibrous Dysplasia. I have been involved with the foundation for about 10 years now. Since its inception the foundation has helped so many families from across the globe. The progress that the board and leadership team made over the last decade is very commendable. The recently concluded global conference that the team put together saw the best research and thought leaders come together and exchange ideas to further research in the space. I am very confident that this team will make remarkable progress and will soon come up with a breakthrough that will make a big impact in the life’s of so many families across the world.
The FD/MAS has brought me an extended family. A family with others like myself, a team of people who care, doctors and researchers who are passionate about helping people like me!
They provide fundraising opportunities to help advancement in research such as $1 million bike ride, they provide educational resources for newly diagnosed families and current patients, and they provide community building opportunities to connect with each other.
I most recently had the pleasure of being on the planning committee for their in person conference. I have been a member of the patient advisory council which has provided me new learning experiences on legislation advocacy, and how I can help others just like me.
FD/MAS Alliance brings together all the best in research, medical care, and community members. They helped me connect with other moms who have experience with this disease.
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The FD/MAS Alliance hosting a wonderful conference this year that reminded me I wasn’t alone in my disability journey.
I was diagnosed with fibrosis dysplasia in 1996. I have it in my entire upper torso (including spine, arms, and skull. I felt very alone and was told the chances of ever meeting/talking to anyone else with it were slim to none. Thanks to groups like this, especially on social media, I’ve been able to connect with others and I no longer feel alone. I am very thankful for this. It has made a world of difference in my life. Thank you!
As an individual diagnosed with Fibrous Dysplasia, I am so thankful for all this foundation does to support the FDMAS community and to try to find treatments.
FD/MAS is an incredible organization both providing information and shedding a light on this debilitating disease. For the size of the foundation and their limited funding they provide a great service and resource.
The FD/MAS Alliance is important for my family and I, as it is for many other patients and caregivers. My wife and I's daughter was diagnosed with McCune Albright Syndrome in June of 2022, shortly after her second birthday.
As a parent I struggled to know what to question, who to resource, and how to provide our daughter optimal care. The lack of knowledge our pediatrician and specialists had regarding this disease was shocking. Because of this knowledge gap in the medical community advancing research and providing education is vital.
It is important to give hope to patients and caregivers. The FDMAS Alliance is doing that by fostering the development of evidence-based treatments for Fibrous Dysplasia and McCune-Albright syndrome. I am so glad an organization is advancing research, providing education and channeling the voices of individuals and caregivers with FD/MAS.
I am honored to serve on the FD/MAS Alliance Board. I joined the organization in 2020 to better support my two unrelated family members diagnosed with the disease. Through this involvement I have learned so much and am in awe of the work accomplished by a small but determined staff, our medical and scientific colleagues, my peers on the Board and a wonderful community of advocates...patients, parents and allied health supporters. I look forward to what lies ahead for research, treatment and hopefully a cure. This global team is creating impact for sure.
Amazing organization that well run and serves a critical need. The Million Dollar Bike Ride was important and a lot of fun. Can't wait until next year.
We have been involved since our daughter’s diagnosis in 2016 and have received a tremendous amount of support and knowledge to help us and her physicians make the best decisions in her care. The sense of community and opportunities for connection and growth offered by the Alliance have been a great benefit to our family. My involvement with the organization has helped me to solidify and follow my mission to drive things forward for patients and families to bring forth a greater sense of a connected community and a treatment or cure.
The FD/MAS Alliance is a fantastic organisation with a breadth of knowledge and advise for patients and caregivers. As someone who has been diagnosed with FD/MAS I have utilised the information and support from the charity. I now have the honour of working closely with the charity and seeing the wider impact they have.
As a patient with FD/MAS, I’ve found the FD/MAS Alliance to be a wealth of knowledge to patients and caregivers. I’ve encountered doctors who had no idea about MAS but with the Alliance’s “physician database”, I’ve been able to find specialists in my state that are knowledgeable about the disease. The Alliance’s FD/MAS toolkit has also been helpful in managing my care.
I am VP of the Board of Directors and the mom of an FD patient. I am so proud to be part of this incredible organization that serves a rare disease community with invaluable resources — from in depth medical information, patient webinars with world renowned scientists and doctors, patient family conferences, and extraordinary fundraising for research that funds grants to researchers all over the world focused on finding a treatment and someday a cure for this debilitating disease.
As someone with FD/MAS, FD/MAS Alliance is my main knowledge hub. I don't know where I'd be getting my information from if it wouldn't be for them, because information about FD/MAS seems to be scattered all over the internet. FD/MAS Alliance makes my life so much easier by saving me precious time and energy that I don't really have but must put in so that I can better manage my health, and help others too. Their newsletter delivers news, education and engagement opportunities to keep me up to date. Very grateful for this org!
As a patient, being able to tap into a community of like minded individuals who intrinsically understand my experiences and challenges is an incredible experience. I feel seen and understood in a way I never did before. Additionally, the Alliance is an excellent resource for up-to-date clinical information, treatment guidelines, and a physician database. They collaborate with researchers and organizations internationally, consistently plan and host educational webinars to increase patient/caregiver understanding, and seek feedback from the community to improve the level of support given. I am so thankful I found this organization, was accepted into it, and was given the opportunity to become more involved. It has tremendously improved my life, happiness, and understanding of FDMAS.
I was able to assemble a world class medical team through the FDMAS Alliance. Since it's a rare disease many physicians haven't seen it in their patients. They didn't know what to do with me.
This non-profit that got my care back on track. FDMAS Alliance introduced me to UCSF's Bone Metabolism Clinic and that made all the difference. I added an endocrinologist to my medical team. Thank you FDMAS Alliance!
Not only am I a donor to this effort, but I have been a part-time employee of the FD/MAS Alliance for almost 4 years. I am amazed by the compassion and commitment of the Board, staff, medical partners, and community to support research grants and to get information out to patients and their families. The growth of the organization since it's creation in 2004 speaks volumes. I am honored to be a part of this important work.