Running in the NYC Half Marathon to raise money for Signe and other kids with M-CM. Join me in helping them!
The NYC Half Marathon is Jan. 27, 2013. Twice around Central Park for 13.1 hilly miles - this course is no walk in the park. Quite the challenge for me, so please help with your support while I brave the cold for the cause!
My daughter, Signe, was diagnosed with macrocephaly-capillary malformation (M-CM) a rare genetic syndrome. Signe is 3 years old now and she has brought me, and many others, constant joy and love. My wife, my two sons, and I are blessed to have Signe in our lives, as together we learn patience, perseverance, and persistence as we greet the many challenges and discoveries that are inevitable with a child with M-CM.
My aim is to help the M-CM Network, a non-profit started by my wife, Christy Collins, and a few other angels, to achieve their goal in improving the lives of these kids affected with M-CM, and to maybe have some fun doing it with the love and support from family and friends!
Here's some information about the syndrome, and the goals we share, taken from the home page at m-cm.net:
Macrocephaly-capillary malformation (M-CM) is a rare, genetic syndrome first identified by researchers in the late 1990s. Many medical providers are unfamiliar with M-CM and affected children and their families face more questions than answers regarding the course of this condition.
M-CM Network provides comprehensive medical information about M-CM to aid in diagnosis and treatment decisions. Our goal is to establish a disease registry to collect data about affected individuals so that we can greatly expand the scope of what is known about M-CM. You can donate to help us meet this goal.
Visit Signe's snapshot for a personal account of a day in the life with Signe. Please help me to help her live a more comfortable, joy filled life that she deserves, today! Thanks, Steve Collins