For all of Zev's eight and a half years, friends and family have asked about research opportunities for MSUD and ways they can support Zev. I am grateful and pleased to announce the time is now.

MSUD is an incredibly challenging and scary medical condition that our family lives with every day. Zev is private about what living with the disease entails, though perhaps one day he will be ready to share more of his story. In the meantime, I will briefly fill in a few blanks.

Zev endures regular trips to Lurie for blood work. He's had hundreds of blood tests-- at times a few trips a week. He drinks anywhere from 26-32 oz of medication daily. He's had many hospital stays -- more than 20. And then there's the strict diet he follows religiously: no meat, no poultry, no fish, no eggs, no beans, no nuts, no ice cream, no pizza, no challah. As you can see, that's no to A LOT.

One child in 180,000 is born every year with MSUD, and very little research has been done. The quality of a person's life with this disease rests on the quality of doctors treating the genetic diseases. It means that every choice we make for Zev, or the choices he will make for himself in the future such as camp, vacations, college, and beyond, will revolve around knowing there are doctors in close proximity trained to treat him. Unfortunately, that's not even a given in all parts of the United States.