Happy Birthday Jonah!

Hi All,
Saturday is Jonah’s 3rd Birthday! Last weekend we kicked off Jonah’s Birthday week at Grandma and Grandpas. Jonah talks about his cousins Faith and Jacob all the time, he loves them so much. It’s fun to watch them play, they get along so well. We invited another Sanfilippo family to have cake with us. The Vanderpools have two boys Jason 20 and Jon 24 with type B. This was the first time we got to meet the family in person. We have been FB friends for sometime now, they live very close to Jeremy’s parents. It’s awkward to admit that your thankful to have another Sanfilipo family close by. You don’t want anyone else to have to suffer through this this disease. Yet, I’m glad to have such an amazing family near. The boys are in really good health too, which is always wonderful to see.

Sanfilippo Workshop 2011, UK

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On the road again... next stop Northampton

My first blog....On the road again.

Jeremy and I are heading to a "Sanfilippo Workshop" in Northampton. The workshop is being hosted by the UK MPS society, it's goal is to help bridge the gap between: pharma, research and Sanfilippo advocate groups. We're very excited to be a part of this meeting for several reasons. They are as follows:

Our researchers Bigger and Pshezhetsky will be in attendance. Pshezhetsky is working on a mutation specific therapy for Jonah and friends. JJB hopes to fund Bigger on a viral vector ASAP. (I just can't get enough of our researchers. I wish I could sit in their office's and work, so I could watch the lab techs work on a cure for our kids.)

Brett Crawford from Zacharon will be attending. The Sanfilippo community is very anxious to learn more about the potential trial that Zacharon is working on in partnership with Pfizer. Pfizer just gave Zacharon a $210 million dollar contract to help take their "small molecule" to clinical trial. At this point this potential treatment is Jonah's closest hope.