Update October 2015

We've been living overseas since about the time this blog petered out. There are lots of funny Mo-and-Curly-abroad stories to share -- I'm exploring the best way to do that.

Thanks for tuning in!

Friday, December 3, 2010

Calling all my Hirschsprung peeps

I know a lot of my readers are connected with the Hirschsprung community.

And what do all of us HD people want?

Better information and improved diagnosis and treatment.

To make that happen, there needs to be more research. And guess what? There's some happening right now at John Hopkins. And they need more participants.

So please check it out. All you need to do is sign a release form so they can access medical records and submit a blood or saliva sample. They'll send you a kit and walk you through the process. Easy, peasy, as Mo would say.

We all know how rare this disease is. Have you ever met another Hirschsprung patient or parent? I haven't -- not in person. So you can understand their challenge in trying to find us for research purposes.

Here's how to get involved.

Here's an interesting overview.

I signed up yesterday, and they're sending our kit Monday. I'll keep you posted.

2 comments:

  1. Hi Brooke,

    I wanted to let you know that we went through the process to donate for the research study at John Hopkins a few months ago. It was a really simple process. My son Noah, my husband Nathan and I all gave blood (My husband and son both have HD). We had to get a doctor's order from Noah's pediatrician and pay out-of-pocket for the blood draws, but we sent the receipts (scanned in an email) to the research team, and John Hopkins sent us a check to cover the cost. The hardest part was going through the blood draw with two-year-old Noah. It was a really difficult process, but we were out of the lab in 20 minutes. Noah was just fine once we left the doctor's office. I believe giving to the research study is well worth it!

    Thanks for posting this!

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  2. Leah - Thanks for sharing your experience! It's great to hear from someone who's been through it. We're lucky that Curly is very, very good about getting sticks - sometimes he doesn't even cry, and if he does it's only for a few seconds. Sorry to hear that it was tough on Noah! Take care, Brooke

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