Raising funds for M-CM research

Dear friends,

A few months ago I opened my inbox and discovered with great surprise an email with the subject : ’Congrats! You’re running the 2022 tcs New York City marathon’. I was the lucky winner of a draw. Even though I was super excited, I also felt I did not have enough time to train and be mentally prepared.

I thought about giving up but then I realised that I had a great opportunity: running to help raise money and awareness for the M-CM syndrome, a rare genetic condition which unfortunately affects someone in my family and many other people across the world. This rare condition may go unrecognized or misdiagnosed making it difficult to determine the true frequency of M-CM in the general population.

What is M-CM?

M-CM stands for macrocephaly-capillary malformation. It is a rare genetic syndrome that causes irregular growth in parts of the body and the brain. Specific effects and severity vary from person to person, but common characteristics are brain overgrowth, hypotonia (low muscle tone), and developmental delays. Many patients also have vascular birthmarks and body asymmetry.

How your donation will be used?

The M-CM Network maintains a contact registry that is used to keep patients connected to research opportunities. We have facilitated and funded a meeting of patient advocates and clinical researchers to develop clinical management guidance. We have also funded ongoing laboratory research projects for studying M-CM affected brain cells and the potential for drug treatment of hydrocephalus in M-CM. We can do so much more with your support!

Please find below the link to the M-CM network

https://www.m-cm.net/