2011 GFPD Family & Scientific Conference opening video: http://youtu.be/nDgwSc0M8nQ
Did you see Ethan? :)
Where do I even begin??? It was an amazing and emotional couple of days, that is for sure. Families from the U.S., Canada and even Australia were in attendance and the top PBD doctors and researchers in the country presented as well as specialists in the fields of hearing loss, vision loss, and deaf-blind education. Ethan even got to see the top two PBD doctors in North America on Tuesday morning where a PBD clinic was held.
There was so much information packed into a day and a half! It was great, and I'm glad they provided handouts, because it was information overload. Unfortunately, the bottom line is that there are still no cures for these disorders, and the only real "treatments" are treating symptoms as they appear - therapies, feeding tube if needed, etc. The researchers are continuing to work on possible treatments and have a few mouse models that they are working on. One of the main focus of research is on trying to find a way to increase peroxisome function. There is some hope that they may be on the verge of finding a way to do this, but it is still years away from human trials.
Even more than the information from the presenters, I was looking for the opportunity to spend several days with other families that "get it." While most of the families in attendance have children who are still fighting PBD, a few of the families have little ones already waiting on them in heaven. I was blessed so much by these very brave men and women who came and shared their lives with us. They are my heroes. One night several of us moms stayed up until 2am talking, sharing, laughing and crying. What a tremendous bond I have with women that I had never met in person until the conference. I miss everyone so much already.
Here are a few pictures from the conference weekend:
|Ethan and his new friend TJ. We went to the zoo with TJ and his family.|
|Ethan and his friend Kenna. Her family went to the Omaha Zoo with us too! We feel very blessed because Kenna's family lives just 2 and 1/2 hours from us, so we'll get to visit with them often!|
|Jeff and Ethan swimming at the cookout/pool party held and Ethan's friend Sam's grandparent's house. Ethan loves the water!|
|Ethan's friend Jordan and his mom and dad. Jordan is a real cutie!|
|More friends! Katherine is 16 and lives here in IL and Sam just turned 9 and lives in NE. It is Sam's grandparents that have the pool. :)|
|Two very special women - Melissa and Carolina are great women of faith and amazing moms!|
|Here is a picture of opening night/dinner on Sunday evening. I miss everyone already!|
Here is a link to the memorial video: http://youtu.be/6fDo5wGVSjU