Research is a term we use pretty often around here! Even though many of us do not have even the slightest professional connection to science, we have tied our wagons to its star and are doing everything we can to take advantage of its power. When we think of research, we generally think of scientists hovering over their microscopes or carefully pouring bubbling , mysterious concoctions into glass beakers. We think of women and men in white lab coats with petri dishes surrounded by bunsen burners and half-filled cups of coffee, long since gone cold.

Those images are a vital part of research, the higher-level process that gathers the information we need to piece together the mystery of PWS. On another level, however, there is a very different scene.

There is a very human face to so much of our research. In addition to analysis in the lab, we also need to remember the countless numbers of individuals with PWS who have given a great gift to research–the gift of data, sometimes offered at a significant sacrifice. Many of our children who have been diagnosed with PWS have been questioned, poked, prodded, x-rayed, scanned, and put through every imaginable evaluation. In a recent study at Duke, many of our children put themselves through a series of blood draws, 12 draws in 6 hours, and they did this not once–but twice. Many traveled from great distances at their own expense in order to support this work. In the UNC study, our children underwent vigorous evaluations for 2-5 hours each, time when they could have been in the pool or playing with their friends and siblings. Many of our children are participating in Dr. Jennifer Miller's study in Florida and are traveling across the country to do so, again at significant personal expense. These are just three examples of "research" that asks our very own children, the ones who are already facing the complex challenges of PWS, to allow themselves to be further analyzed in order to provide information that will benefit the larger PWS community.

When I look at the picture of Erin's pale, tired face in that hospital bed, and I remember what it took to get, and keep, that IV in, and then to keep the blood flowing for all of those draws, I still cringe. I think of Nick Baskin coming all the way to North Carolina from Michigan–twice. I think of Danny Craig coming from Florida, Danny Opp from Pennsylvania, Nolan Kryzak from Wisconsin, Kathryn Baxley from Ohio, William Compere and Juliette Anderson from California, Sarah Newton from Kentucky and on and on and on. I think of countless children in countless projects over the years who have given SO much–not even for treatment for an illness. These children have agreed to go through this to add their personal information to the bank of PWS data needed to help us understand how PWS affects their bodies, as well as the bodies of children they will never meet, children who, like them, have been diagnosed with Prader-Willi syndrome.

Friends, these children are our heroes! They are doing their best to work with this horrid hand that they have been dealt. Let's do everything we can to call a halt to PWS and free our children from having to give up any more than they already have. Life is short and childhood is shorter. I would so much like to be able to give Erin all the days back that she has spent in doctors' offices and in therapy, as well as all the time that Kristen has spent having to go with us. Each and every one of you would like that for your children, too. Since we can't do that, let's commit ourselves to doing everything we can to make sure that our children don't have to contribute any more of their lives than is absolutely necessary to this lousy diagnosis. Let's all work together to create a force stronger than PWS, a force that will destroy the hold that PWS has on our children, and clear the way for them to have the wonderful, satisfying, joyful futures that they deserve. It will take all of us working together, but we can and will do it!

Onward…Together. ..


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