M-CM stands for macrocephaly-capillary malformation. It is a rare genetic syndrome first identified by researchers in 1997.
Could you tell us a little about the M-CM Network and how it was formed?
When my daughter, Signe, who is now 2 and a half years old, was diagnosed with M-CM, there was already a strong patient support community online facilitated by a family in England. The Internet and social networking largely solved the problem of connecting patients to each other without the need for a formal organization or fundraising. Because peer support was taken care of, our own organization was founded to accelerate research and make it easier to get clear, reliable information about M-CM.
AnnMaria De Mars is President and founder of the Julia Consulting Group based in Santa Monica. She’s worked in both academia and business. We talked to her about how access to research affects her consulting business, and her reaction to the Research Works Act
Could you tell us a little about the Julia Group and what you do?
We mostly do statistical consulting, contracted research and customized programming. We were originally a satellite office of Spirit Lake Consulting, Inc., founded around 2000. We spun off as a separate company in 2008.