As of August 7th, babies born in New York will be screened for Krabbe Disease as a part of their newborn screening panel ( Read more... )

I've found a very easy way for everyone to help generate some money for Hunter's Hope (or whatever your favorite charity may be ( Read more... )

Check out this amazing father-son team:

www.teamhoyt.comThe son, who is about 40 years old, has spastic quadriplegia and CP. He and his father have been racing in marathons and triathlons for nearly 30 years - the son is pushed in a wheelchair, rides in a seat on the bike or is pulled behind dad in a special raft during the swimming portion. The ( Read more... )

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Hello all, sorry it's been a while since my previous update. I kept thinking, "Oh, I'll wait until after _______ appointment, then I'll update with that info." But things kept coming up so I kept putting it off... needless to say it's been a busy few weeks ( Read more... )

Donor cells are UP, back to 23%!!

Fractionated labs are still funky (to quote Dr. S ;) ), but the overall number looks good so we're happy. Hooray!!

( Long update from jackson's journal... )

( Therapy and fun! )

I just got the results of Jackson's donor cell test from last Monday... down again, to 18% :(. We test again in about 3 weeks, and we'll do an enzyme level at that time as well. This sucks. I don't know about the fractions yet, there may have been lab issues with the breakdown of the total percentage so we may not get those results this time. ( Read more... )

Thanks to an e-mail tipping me off (thanks, Kelly!), I just found the gift certificate to Beyond Play from jackson_friends! Dumb me didn't notice it when it came, I just thought it was their normal catalog mailing and set it aside. Thank goodness I didn't throw it away, it had the GC tucked inside it! Thank you all so much, we are going to have a great time ( Read more... )