2018 Grace Science Update


Please click the following link to read our exciting 2018 brochure:

Grace Science Update

Dear friends and supporters,

Every year our calendars are flooded with special days of remembrance. One day is dedicated to rare disease awareness. That day is February 28th. Like most of you, we had no idea what a rare disease was or even that there was an entire day dedicated to it. It’s a special day for us and our mission. It typically offers a time of year to reflect on how far we have come and how much further we have to go.

In addition to being a special day annually, this year is extra special. 5 years ago, nearly to the day, Grace received her diagnosis. The exhausting search for an explanation for our baby’s symptoms finally ended. Our lives changed forever. She was only the second child in the United States with the rare genetic disease called NGLY1 Deficiency. While no one wants to have their child diagnosed with a rare disease, having a name allowed us to close the diagnostic odyssey and mobilize an action plan.

Many of you have been long time supporters. Others are new friends who have shown an interest in supporting a rare disease whose research will allow us to better understand more common diseases related to aging and cancer. Our work will affect each and every one of you and your loved ones.

We hope you will enjoy reading 2017 highlights and what lies ahead in 2018. Please join us in our mission to improve and extend the lives of all patients living with NGLY1 Deficiency and other diseases worldwide. The time is now to find a cure and your support will make a difference immediately.

With gratitude,

Kristen & Matt Wilsey


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