Today is May 1, which means the start of Ichthyosis Awareness Month! (what, you didn't already know that!? :) )
I've mentioned FIRST before on this blog. FIRST is the Foundation for Ichthyosis and Related Skin Types, and the mission of FIRST is to "educate, inspire and connect those touched by ichthyosis and related disorders through emotional support, information, advocacy and research funding for better treatments and eventual cures." With the assistance of experts on its Medical &Scientific Advisory Board, FIRST also helps to sponsor ichthyosis research.
We have had several friends, acquaintances and blog followers who have made donations to FIRST in Brenna's name since her birth, and for that, I am so touched and grateful! There is very little money given for ichthyosis research because it is so rare. And Harlequin is one of the rarest.
But research will hopefully mean that one day a cure will be found, so that these babies don't have to fight for their lives and face daily challenges throughout their lifetime in regards to their skin. And through raising awareness, people might be more willing and able to accept these children from the first second, and not judge or ridicule them because of their appearance.
During May, FIRST holds a fundraising campaign called "It Makes Cents to Help FIRST," which encourages everyone to collect change for ichthyosis awareness and research. I had high hopes of coordinating a change collection here locally this month, but I quickly realized that I would be getting in way over my head this year :) However, we will definitely be collecting change in the Westlake household to donate to FIRST!
We would be so thrilled if anyone would like to join us in this endeavor and collect your loose change for the month of May for FIRST. If you want to make an online donation to FIRST for ichthyosis awareness and research, you can do that here.
I also want to thank all of you who have been so diligent about sharing my blog and Brenna's story with others. I am beyond grateful that you have all been so actively involved in raising awareness about Brenna's condition. Thank you for loving my little girl!