Hey! Clifford Ray! Good News!

Master Dahl,

Sounds like they're working hard for you! I say a prayer for you every day, Buddy. Tell your dad that we really miss his blog, and we want an update as to how you, your little brother, and Mommy are doing. Stay strong.

Love,

Aunty Polly

New, important, and hopeful research in the battle against Batten Disease.
Check it out! And then, if possible, write a check. I didn't know anything about Batten's Disease until a year or two ago. In Pollyterms, (and I'm not an expert by any means) I describe Batten's as similar to Alzheimer's, except that it strikes little kids- resulting in seizures, memory loss, blindness, paralysis, and eventually- death. Most kids don't survive past the teen years.

I think one of the most frustrating things about this heartless killer is that experts (real ones, not the Polly kind) agree that a cure is within reach. However, since Batten's is considered a "rare disease" funding is lacking. Rare diseases are not rare. Chances are quite good that you or yours will confront one. Maybe it is about time that Americans demand that government dole out research dollars differently.