We had SUCH a wonderful weekend at the FD/MAS Community Conference and left with full hearts and a head full of ideas about where we can go from here.
Together, we were:
26 People diagnosed with FD/MAS
27 Caregivers and family members
40 Researchers and clinicians
plus other advocates meant:
100 people all together!
This conference coincided with a NIDCR celebration of 25 years of FD/MAS research at the NIH. To learn more about the NIH research symposium click here.
“I learned how much we need each other”
“I saw how much these doctors are invested in FD/MAS! -Thank you!”
“Meeting others with FD has been life-changing!”
“The speakers were incredible. With the latest information, that just brings hope for future generations.”
“I found the connections to people to be the most valuable thing. Being able to hear first hand the experiences that people have had living with FD/MAS.”
We don’t know for certain when the next meeting will be, but we do know that our work (whether it’s conference planning, research opportunities, or clinical care webinars) would not be possible without our supporters.
You can make a big difference in the next chapter for the FD/MAS community by becoming a monthly donor. Our Charlie’s Angels give at every level – from $3 to $1,000 – and every single gift matters. Your gift allows us to plan with confidence and sends the message that you are committed to the success of the FD/MAS Alliance’s mission.
The Board of Directors for their leadership and vision
The Conference Planning Committee for their thoughtful guidance and hard work
The Medical and Scientific Advisory Councils for their expertise and generosity
The Patient Advisory Council for their commitment and creativity
To Drs. Michael Collins and Alison Boyce for their dedication and patience
To the ICFDMAS board for expanding the field and encouraging progress
To all those who attended the conference and made it the meaningful weekend that it was.
Chairs:
Chris Guest, Parent & FD/MAS Alliance Board Director
Carmel Shemmesh-Rafalowsky, FD/MAS Alliance Board Director & Patient Advisory Council Member
Brittany Anderson, Patient Advisory Council Member
Tovah Burstein, FD/MAS Alliance Community Engagement Director
Anne Corvelle, FD/MAS Alliance Board President
Nicola Deeley, FD/MAS Alliance Board Director and Patient Advisory Council Member
Suzie Doody, FD/MAS Alliance Finance and Donations Administrator
Bethany Hammond, Patient Advisory Council Member
Adrienne McBride, FD/MAS Alliance Executive Director
Voncia Monchais, Parent
Sarah Mumper, Patient Advisory Council Member
