Category Archives: Patient Groups

Ernesto Priego, multi-scholar and carer

I wanted to interview Ernesto when I saw this tweet:

ernesto priego loch ness profileI got in touch, and he agreed to talk to us.

Can you tell us a little about yourself?

I’m a full-time academic in a London University. I have both British and Mexican nationality. My background is in English Literature and Cultural Studies, and my PhD was in Information Science, looking at the way comic books relate to reproduction technologies in the context of the so-called “digital age”. I have a wide array of interests that could all be covered by the general umbrella term of “culture” (this includes science of course). Continue reading →

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Christy Collins, mother and M-CM patient advocate

What is M-CM?

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.

Continue reading →