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"Confetti Skin, Beauty Within" is our blog about ichthyosis and its effect on our lives. Rachel and our three boys are affected with the form of ichthyosis called "icthyosis en confetti, type 2".

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Here's our summary of our best and most important posts of 2012.

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2014 Ichthyosis Conference – Day 2, Morning

After writing the last entry, I collapsed in bed to get a whole…um….five hours of sleep before my alarm went off at 6:15. By 7, I was back in the clinic, helping families get to their appointments. This morning was even more challenging than yesterday. Many flights came in during the wee hours of the [...]

2014 Ichthyosis Conference: Day 1

Wow! What a great day!

We arrived in Indianapolis yesterday afternoon after a 5 hour ride with some beautiful sunshine, only to have the heavens open on our heads as soon as Rachel ducked out of the car. Fortunately for the rest of us, parking was in the garage and the entry to the hotel [...]

Recap: FIRST Patient Support Forum in Mahwah, NJ, Aug 4th 2013

On Saturday, I attended the Patient Support Forum in Mahwah, NJ put on by FIRST, the Foundation for Ichthyosis and Related Skin Types. It was the second of four regional conferences offered this year — the last two are coming up in September in St Louis, MO and San Jose, CA. I had a great [...]

Jennifer’s updates from this morning’s FIRST Patient Support Forum in Mahwah, NJ

Jennifer See’s updates from the FIRST regional conference in Mahwah, New Jersey on August 3, 2013 [...]

A Double Feature in Milwaukee!

Last Friday, Rachel and I flew out to Milwaukee to attend the testimonial dinner in honor of our doctor and friend, Amy Paller. But as the title suggests, Friday was a double-header. Since I had some extra time in the morning and afternoon, I tried contacting families in the area affected by ichthyosis and arranged [...]

FIRST New Jersey Conference, Laundry update and more!

I just made my hotel reservations for the FIRST Regional Conference in Mahwah, New Jersey on August 3. There’s quite a few people listed as attending on the event page on Facebook. I can’t believe that it’s only a week-and-a-half away — the summer has really slipped away from me. I’m planning on trying another [...]

What I learned at the FIRST Patient Support Forum in Dallas

I think I’m just about recovered from my weekend jaunt to Dallas. (If you haven’t done so already, check out the transcript of my liveblog of the FIRST Dallas regional conference.)

But rather than just leave you, faithful readers, to sift through my stream-of-consciousness and typo-laden liveblog, I thought I’d write here about things that [...]

Liveblog Transcript: FIRST Dallas Conference / Patient Support Forum (6/8/2013)

Thank you so much to everyone who joined my liveblog of today’s FIRST Patient Support Forum / Regional Conference in Dallas. The views (and participation from online viewers) really exceeded my expectations. Some of the discussion in the room was hard for me to follow (at one point three or four separate conversations started at [...]

FIRST Dallas Regional Conference LIVEBLOG – June 8, 2013

Rachel’s liveblog of the FIRST Dallas Regional conference is now over, but we have made the full transcript available in a new post.

Questions for Saturday’s FIRST Regional conference?

I will be liveblogging the FIRST Dallas Regional Conference on Saturday, June 8. The conference starts at 9:30 AM US Central Time (14:30 UTC/GMT, 15:30 BST, 0:30 6/9 AEST (sorry, Aussies)), so please join me here on the blog during the conference for live updates. You can submit questions for the presenters here on confettiskin.com. [...]