I turned 30 this past weekend. And all I can think about is the fact that the year I was born, babies with Harlequin Ichthyosis did not survive. Now, more than 50% of the babies born, affected with HI, survive. It is quite amazing how far medicine has come in just 30 years. I can only imagine how much more things will improve in Evan's lifetime. There is so much hope for better treatments and possibly one day, a cure.
All the more reason to support the FIRST Foundation. During the month of May, consider collecting some change at home, participating in the "It Makes Cents to Help FIRST" campaign. This fundraiser was created by the FIRST Foundation and I am participating in it during this month. Even if you only collect $5, it is $5 more dollars than we started with. I can send out labels for jars if you are interested, as well as information from FIRST. Contact me at firstname.lastname@example.org
This week I wanted to share the posts from last year's Ichthyosis Awareness Month. Last year I focused on a different topic each week and feel it is worth reading again in honor of IAM. If you didn't read them last year then make sure you check them out now! Stay tuned for more IAM focussed posts throughout the month!
Ichthyosis Awareness Month: Week One: The Facts
Published on May 3rd 2012
This link includes the facts about Ichthyosis and Harlequin Ichthyosis
Ichthyosis Awareness Month: Week Two: My NICU Experience
Published on May 7th 2012
This is my story about Evan's birth and experience at Yale's New Born Special Care Unit
Ichthyosis Awareness Month: Week Three: Ichthyosis Education
Published on May 14th 2012
Details about Harlequin Ichthyosis and others living with it. Also includes sites where you can learn more
Ichthyosis Awareness Month: Week Four: Acceptance
Published on May 23rd 2012
My view and beliefs about acceptance and accepting the life I was given