When our daughter, Eden, was born in 2008 my wife, Caroline, and I were elated that she was joining her brother in our growing family. We experienced her birth like any family -- with joy and expectations, dreams for the future, and pure happiness for the blessings before us.
Very soon afterward, however, we began to realize that something was not quite right with Eden’s development. The doctors we consulted didn’t seem overly concerned initially, but Eden wasn’t meeting early milestones of turning over, of sitting, of grasping, and her vision seemed problematic, as well. In our hearts, we knew that there was something deeper at play.
At eighteen months old, when we received Eden’s diagnosis of Mucoplipidosis Type IV, we were confused, heartbroken, and scared. And we also knew that we needed to be involved in the only organization, the ML4 Foundation, which had ever been established to fight for treatments and a cure for this disease.
Shortly after Caroline and I joined the Board of Directors of the ML4 Foundation in 2011 we worked with the board to create and fund the position of Executive Director for the Foundation. With this new professional funded and hired, board members have worked tirelessly to increase the visibility of the Foundation so we can achieve our goals of treatments and, ultimately, to cure ML4 for my Eden, and for the all the other children with this horrible disease. I invite you to view our videos to learn about the disease and the researchers who are working on treatments, like us on Facebook to see frequent updates from our Foundation , and sign up to receive our e-newsletter. Amazing research on ML4 is taking place at top institutions around the world and we look forward to sharing the bright future with you.
Please join us in our journey of hope and discovery,
Randy S. Gold
President of the Board
The Mucolipidosis Type IV Foundation
Michael Friedman, Ph.D.