Blog

We Say Goodbye to a Wolfram Trailblazer and Friend

Jon Wasson Yesterday our dear friend Jon Wasson passed away after a lengthy battle with Cancer. Jon was instrumental in the discovery of the Wolfram gene (WFS1). Jon worked closely with the late Dr. Alan Permutt, both bringing Wolfram syndrome research to the forefront at Washington University School of Medicine (WUSM). Jon played a major […]

Not Your Typical Holiday

I love holidays.  All of them.  I even love those special days we’ve created, “Sweetest Day”, “Grandparents Day”, “Take Your Child To Work Day”.  But who knew I’d be so involved in something called “World Rare Disease Day” on February 28th.  Not exactly something that was on my radar a couple years ago.   But, here […]

Where Do I Begin?

It was a little over 2 years ago when I embarked on this journey with Wolfram syndrome. Last October, I received a devastating blow, one that would change my life and others forever.  My youngest daughter, Raquel, was diagnosed with Wolfram Syndrome, a terminal form of diabetes.  She had been diagnosed with Type 1 diabetes […]