Sunday, January 22, 2017

One week until Boston!

At this time next week I'll be in Boston. It's been on my mind so much lately. I've never flown alone, I haven't flown period in probably 10 years and I am not the outgoing type around new people.  All that said I couldn't not go on this trip. We have waited almost Issac's entire life to find out if he had a syndrome or what was causing some of the issues he deals with. In the short time of the Undiagnosed Disease Network being opened at Duke we got some answers. I want to be involved with helping others that are and will be going through this process.  I will be working with this Participant Engagement Group for the next year. I'm anxious to see exactly what we'll be doing.  While looking at the Harvard UDN site the other day I ran across some of the things that have come up for us this year. It still makes me cry to read and watch these. I'm so thankful for what we know and yet we really don't know much. I'm thankful for how much Issac has grown and how much I know he'll continue to grow. Just thought I'd share these with you all.

Issac's page

Channel 5

Issac's Gene

Our Team

Channel 11

Publication

11 comments:

  1. Praying that you have a good trip and can be an encouragement and help to others.

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  2. I hope you have time to enjoy a bit of Boston too!

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    Replies
    1. I'm going to try Sheila. I'm not one to go exploring alone (LOL)

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  3. Just remember that God's got you in His hands. He's watching over you while you travel. Praying that your trip is successful and you have a safe trip.

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    Replies
    1. Thank you so much Meredith. Prayers will be greatly appreciated.

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  4. may God let you accomplish on this trip what your heart desires. :)

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  5. I pray that your trip will help you find the answers you hope to find!

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  6. Trusting your trip all goes well for you.

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Week Ending 6/2417

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