M-CM Network

BY: Sammi G |Dec 11, 2018


The M-CM Network serves families affected by macrocephaly-capillary malformation syndrome, an ultra-rare genetic condition with under 200 known cases worldwide. M-CM is an overgrowth condition that affects the brain and body with a wide range of severity. The most notable characteristics are brain overgrowth resulting in macrocephaly (larger than normal head), vascular birthmarks on the body and face, and low muscle tone with hypermobility. Most individuals have some degree of developmental delay ranging from mild to severe. There are many possible complications from the syndrome and some aspects of it are poorly understood.
The organization was founded by Christy Collins, whose daughter was diagnosed with M-CM in 2010. At that time, there was a rich and supportive online community of patient families sharing valuable information, but no formal organization working transfer this collective knowledge into research and medical knowledge. The M-CM Network was founded with the aspiration to develop a data and biorepository in order to accelerate research.
At this time, the M-CM Network works to make up-to-date research and management information available to patient families, maintains a contact list of patients throughout the world and uses it to connect those patients to the latest findings and research opportunities. The organization also assists in connecting newly diagnosed patient families to the online patient community. A detailed syndrome description and patient stories on the web have helped many practitioners, and even families themselves, to diagnose and understand the condition. The organization sends representatives to research meetings and conferences in order to assert the needs and perspective of the patient population.

Donations to the M-CM Network help to move the organization toward an ambitious goal of collecting patient data and tissue samples in order to accelerate scientific research. In 2012, the genetic cause of M-CM was published, greatly increasing hopes of pharmaceutical treatments for the condition.

Click here to donate to the M-CM Network.
Click here to read family stories about living with M-CM.
Click here for a brochure about M-CM in English and Spanish.