Find Us On Facebook
Follow Us On Twitter
"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".

Read more about us and this blog...

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

In Case You Missed It: Recently From FIRST

During the past couple of months, have you been keeping up with what FIRST, the Foundation for Ichthyosis and Related Skin Types, has been doing online?

Things are ramping up for FIRST’s 2014 Family Conference in Indianapolis, from June 20-22. FIRST published some new Youtube videos — there’s a long version and a short version [...]

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 [...]

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 [...]

Why I Am Attending the FIRST Regional Conference

We have a lot of new blog projects in the works, but I wanted to take a few moments today to write about why I am excited to be attending the FIRST Regional Conference (Patient Support Forum) in Dallas, Texas on June 8. (It’s still not too late to register.)

Here’s what I think the [...]

FIRST Dallas Regional Conference, June 8

I’ve booked my tickets for a trip to Dallas, Texas to attend the FIRST Patient Support Forum on June 8. If you are in the Dallas area (or can make a trip out there), please join me at the conference!

The featured speaker is Dr. Moise Levy, a member of FIRST’s Medical and Scientific Advisory [...]

Cooling Vests

Summer is heading towards us in the Northern hemisphere. Some parts of the country are still enjoying (or not) snow, while down here in Virginia we have lovely 60-70 degree days with a lot of rain. But soon will come summer, and with it lots of 90+ days. Many kids with ichthyosis contend with thickened [...]

Welcome to Maureen Neville, FIRST Communications Director

Jennifer and I are very pleased that we are now able to extend a personal and public welcome/shout-out to Maureen Neville, who started work today as the Communications Director at FIRST, the Foundation for Ichthyosis and Related Skin Types. Maureen wrote a note introducing herself, which was published this morning on FIRST’s web page and [...]

Life With Harlequin Ichthyosis: School Daze

Our guest post today is by Shannon, mom to Lauren. Lauren is 8 years old and a Brownie Girl Scout. ————– “If there were no schools to take the children away from home part of the time, the insane asylums would be filled with mothers.” – Edgar W. Howe

After three years of Early Intervention [...]