Foundation for Nager and Miller Syndromes

FMNS family conference 2006 (www.nagerormillersynd.com)

My definition of a hero is someone who helps other people regardless of who they are. And that is why my hero is the Foundation for Nager and Miller Syndromes. Also they are my heroes because my little brother has Nager syndrome. I was glad when I heard about FNMS. Both syndromes are so rare that most people have never heard of them. My family got involved with them a few years ago. Now every year we host a triathlon in Marathon, Wisconsin, and all the benefits are given to the foundation.

FNMS was started in 1989 by Margaret Hogan. She founded it because in that year her daughter was born with Miller Syndrome. So she scraped up as much information as she could on each syndrome and contacted as many people as she could with the syndromes. Since then the foundation has done many things for people with the syndromes around the world. They have sent new medical supplies to some less developed countries. They will also send professional medical staff to serve people with Nager or Miller Syndrome. Also FNMS, the Seattle Children's Hospital, and the University of Washington recently did a successful research project of finding the gene that causes Miller Syndrome. They are also trying to find the gene that causes Nager Syndrome.

My brother Saul, his friend Tinka, and my mom (www.nagerormillersynd.com)

The people at FNMS do not think of themselves as a hero. DeDe Van Quill, the current director of FNMS, said this: “I do not think of myself as a hero. I am simply a volunteer carrying on Margaret's original mission. However, I do think that the Foundation itself has been a blessing to many families, including my own.” There are only 3 people that run FNMS. There are a few families that are very involved and raise a lot of money for the foundation. There are 119 families that are part of the foundation.

Every two years they host a family conference. The next one is in the summer of 2010 in Chicago. It is an opportunity for people with the syndrome to talk to others suffering the same conditions. They also tour around the city it is in. If you can't afford to get there they will pay for you and one other person to go to the conference. DeDe also said, “We have fun being together like one huge extended family reunion.” I am looking forward to going to the conference this summer with my family. I'm sure it will be a blast.

FNMS has impacted my family in so many ways. Paying for the 2006 conference, and supporting Saul is just some of them. FNMS has done good for thousands of people around the world.