Curing Ollier Disease and Maffucci Syndrome
Our vision is a future where Ollier disease, Maffucci syndrome and related chondromas are relics of the past.
We believe everyone has a universal right to live their best life through quality care and effective treatments.
Our Organization
We are patients, parents, scientists, medical specialists and compassionate humans. Our mission is to eradicate Ollier and Maffucci disease and related chondromas by accelerating research, fostering collaboration, and empowering those affected.
Take Action
Ready to make impact? We cannot achieve our goals alone
We need your donations or your expertise to assist in securing the cure!
We have 3 goals:
Create a global patient registry of all people affected by Ollier, Maffucci, and related chondromas.
Raise $1M to fund research over the next 18 months for Johns Hopkins and other institutions suffering financial loss due to NIH program cuts.
Develop a cure and improve patient care programs by collaborating with public, private and pharmaceutical organizations.
In her own words:
Ashley Eakin is a passionate filmmaker who is committed to capturing the complexity of disability in film and television. In her own life, she has defied expectations having experienced over 28 surgeries and cancer, while also having a 10+ year career in entertainment. Through her journey of coming to terms with her identity, she has found her calling as a writer/director challenging the lack of disability representation, while presenting a more diverse narrative.
This short documentary is a reflection on her childhood and teen years and how the lack of representation impacted her life.