“I make time for this” -Anne Corvelle
Because I know this is important
I am a single mother of two daughters. One of them, Katie, has McCune-Albright Syndrome, and that diagnosis has changed all of our lives.
This school year alone: 30 appointments, 11 specialists, and a 13-year-old carrying exhaustion no child should know. Her older sister Lily manages college applications and school events alone, staying quiet so she doesn’t add to our chaos. I have burned through paid time off, FMLA leave, and every sliver of savings only to watch the cycle reset with the next surgery, the next fracture, the next crisis.
I know I cannot face this disease alone, and I refuse to let Katie and Lily believe that nothing can change. That’s why I serve as Board President of the FD/MAS Alliance and support its work.
This spring, I organized the FD/MAS Research Priorities Workshop. Leading researchers and clinicians listened to our stories and committed to six priorities:
- Pain management: improving available treatments and clinical understanding
- Treatment options: pharmaceutical, surgical, and holistic approaches
- Craniofacial care: because FD lesions in the head are different than the rest of the body
- Scientific understanding of FD/MAS on all systems of the body
- Reproductive health for all phases of life
- Access to knowledgeable care
In that room, Dr. Mike Collins reminded us that we’ve already succeeded in building countless research collaborations and unlocking over $12 million in federal research grants directed to FD/MAS researchers — all made possible by this community. I cried with relief and pride. I also felt the weight of how much further we have to go.
None of it happens without your support.
You can make a meaningful difference in the state of FD/MAS treatment and care: Donate directly to Team FD/MAS – a gift at any level is a message that this work matters.
I’m not asking you to fix the unfixable. I’m asking you to see us — and to help build the systems that keep families like mine from burning out before our children ever get to thrive.
Every dollar is a vote of confidence that the next breakthrough is worth chasing. Help us make it happen.
Anne Corvelle
Mom to Lily and Katie
Board President, FD/MAS Alliance