We Attended the Myotonic Dystrophy Family Conference In LA

On September 19, 2008, we went to Manhattan Beach, for the 2008 Myotonic Dystrophy Family Conference. The conference was great and we were able to connect again with lots of our friends that we've made throughout the years. The Myotonic Dystrophy Foundation (MDF) helped to sponsor the conference this year and I had a table during the conference where we met families and provided medical information. We officially introduced our new websites, www.myotonic.org where we have comprehensive content about myotonic dystrophy and our new online community site, www.community.myotonic.org where families living with myotonic dystrophy can connect.

Going to Manhattan Beach was little surreal. I lived in Manhattan Beach before going to business school in 1998 and all of the memories of how simple life used to be came flooding back to me. The hardest decision that I used to have to make was whether or not I would play beach volleyball or rollerblade until the sun went down after work. I really miss those simple days but I wouldn't give up my life right now if it meant not having Kayla in my life.

I got a phone call today from a family who has a new baby in the NICU who is struggling with congenital myotonic dystrophy and that call reconfirmed to me how important the work I do is. The mom cried to me and told me that I saved her life and gave her hope by documenting Kayla's story in my blog. I cried my eyes out knowing that the experiences that we had with Kayla were helping someone else. That call is one that I will remember forever. Being able to help someone in need is the most rewarding thing I have done in my life.

Well, I need to go feed Kayla so I'll write more later.

Lisa