Hi all! We have a seriously amazing announcement to make! My friend Lisa, who is also a SMARD mom, has been working with the Manton Center at the Children's Hospital in Boston. The Manton Center researches orphan diseases, and has agreed to actively solicit doctors to begin researching SMARD!! YAY!
The tiny but awesome SMARD community has come together to help this study happen. My plea to you, dear readers, is that if there are any other SMARD families out there, please contact me so we can get you involved in the study. The more, the better!
I personally want to thank Lisa and all her hard work. I can't believe how far we have come in the last two years since Dakin's diagnosis! When we began, there were next to no other families to commune with, little by way of information on SMARD, and no research we were aware of. Now we have (found out about, thanks, Victoria!!) genetic research going on, as well as the promise of active research, as well as a wonderful community. YAY!