Monday, July 25, 2011

Cali or Bust

California here we come! I mentioned in a previous post that there is a trial study at Stanford University. We just found out about 30 minutes ago that Will has been accepted - we're so proud, his first college acceptance!

I told myself when he gets accepted, I would start a blog. Well, here we are!

We are slated to go Sept. 6 - 9.

Details on the study: It's a 13 week trial study called EPI-743. We will have to go Week 1, Week 6 and Week 13 for various tests and then do some local lab work with Will's doctor. It's a modified travel schedule for those who don't live nearby.

The results of other patients varies, but overall there seems to be a positive vibe. As a doctor described it during a Mito support group, it's not going to get someone to walk or talk who isn't already doing it, but more so, you might see results with fine tuning their abilities. So for example, Will can walk and talk, but we're hoping this might increase his coordination. Essentially the drug is not the cure, but it's a start in improving the quality of life which will hopefully lead to a cure one day.

As said by a Mito advocate, One thing that is apparent is that without donations there is no research and without research there is no cure. UMDF

15 comments:

  1. College bound at two, he's the smartest kid I know! Such great news about the trial, congrats :) Keep on posting updates!

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  2. So glad you started a blog so we can stay in the loop!! Congrats and good luck with the trial study!!! Love yall!!

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  3. Wow!Such great news! Uncle Sandy and I have been sending mucho good vibes to Will and his wonderful mom and dad.
    Califorina here they come!
    Way to go team Will!
    Lots of love,
    Aunt Dana

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  4. Lori that is great news! I hope everything goes well! So glad yall got accepted, Will is such a sweetheart! See you at our next visit. I will keep updated with your blog.

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  5. Awesome news! Dr. Enns is great! Let us know if you need any help planning logistics.

    -Paulie

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  6. YEAH!! Like I said last night, Charles & I are so excited for Will's college acceptance. Only good things can come from this trial for Will and you & Neil.
    Love bunches,
    Lyla & Charles

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  7. This is fantastic news! Congrats to Will and keep up the blogging. You're a natural! ;-)

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  8. YAY!! I am so excited for you all! And, I LOVE that you have started a blog. It was wonderful to see you all this weekend. Give Will a big kiss from Caroline!

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  9. Thanks for all the great comments and nice notes! We will likely get Will a little Stanford shirt as well :-)

    Paulie, I've emailed Katherine a list of questions so pending her responses I'm sure I'll be emailing you with questions. I hope Anna Beth is responding well to the drug.

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  10. That is such great news about Stanford!! Hope lil Will doesn't get too much homework :) Thanks for keeping us up to speed with your blog. Hope to see you guys soon!

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  11. Great news! Wish you all the best in this trial.

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  12. Kate Philley StarnesJuly 26, 2011 at 4:14 PM

    What wonderful news! I will be thinking about you guys. So happy you started blogging!

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  13. Great to see you today and happy to hear about Will's acceptance. Thanks for starting the blog to keep us in the loop, looking forward to more update!

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  14. Sarah, it was great seeing you today as well! It's been too long. We'l have to do it again soon. Kate and John are too cute!

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  15. So happy to see you've started a blog - we will definitely keep up to date with it! And so proud of Will and his acceptance to Stanford! Good luck in the trial.

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