“I show Jud’s video all the time to doctors and researchers.  It has such an incredible impact!  I call the later onset form of Krabbe…Judson’s disease.  I wouldn’t be surprised if one day it is known as such.” — Dr. Patti Duffner, Hunter James Kelly Research Institute One of the ways Judson’s Legacy is committed

So why are we currently running a campaign to raise $20,000 to build a Myelin Repair Lab at the Hunter James Kelly Research Institute? Of course, part of the mission of Judson’s Legacy is to raise money to treat and cure Krabbe Disease.  But beyond the obvious need for funding rare-disease-research, why does our organization,

This Thursday, Aug. 30th, Drake and I, along with our friend Dean, will be competing as Team Judson’s Legacy on The American Bible Challenge game show airing on GSN (Game Show Network). Anyone who knows me is aware of my tendency toward disassociating myself from Americanized Christian culture, especially as it’s portrayed in the media. 

As we gathered last week with families for the Hunter’s Hope Symposium, I marveled, as I do every year, at the immediate connection felt among the parents.  There were sixteen new families attending this year and yet our hearts were instantaneously knit together.  In many ways the pain of leukodystrophy had joined us in community

Dear friends of Judson… Judson’s Legacy is so pleased to announce the public release of the short film Judson’s Eyes, winner of “Best Documentary” in the 2010 Pan Pacific Film Festival! The short film is available to view in its entirety at: http://judsonslegacy.com/Judsons-Eyes and DVDs are also available to purchase for $6.95.  All proceeds from

Last night, after a day marking five years since our heart-sinking trip to the doctor—signifying the start of our journey into suffering, I was lying in bed staring at Judson’s photo on our wall.  My eyes were dry, but my heart was so, so heavy. It is strange how my sadness over Judson can feel

I think most of us have done it at one time or another… We’re out and about and happen to unexpectedly spot someone we know nearby, but eye contact has not yet been made.  For whatever reason, we don’t feel inclined to engage or interact with the person, so we look the other direction, pretending