Awareness Week Activities 2010

Ichthyosis Awareness Week took place October 3–10, 2010. 
 Many members from across the country took part in activities that focused attention on ichthyosis, FIRST, and our work on behalf of the ichthyosis community.
Erin Burke Edwards of Thomasville, North Carolina, and Laurie Ann Fiore of Wynnewood, Pennsylvania, each set up displays with information about FIRST and ichthyosis at their local libraries to educate the general public. Erin has a 4-year-old son, Ethan who is affected with lamellar ichthyosis. Laurie Ann has two children affected with CIE. In addition to her display, Laurie Ann has been actively sending messages on Facebook alerting news media and agencies about Ichthyosis Awareness Week and FIRST.            
Jeff and Tammy Gerber, of Hanover, Indiana have two daughters, McKenzie and Kennedy, affected with lamellar ichthyosis, and another daughter, Kendall, who is not affected. The Gerbers set up a table at the girls school during Ichthyosis Awareness Week and held a candy and bake sale. There was also popcorn available. They made a great sign with FIRST’s logo on it to display behind the table. The entire Gerber family worked together, manning the table and raised more than $200 for FIRST. This was truly a family affair. 
Daniel J. Siegel, Esq., FIRST General Counsel, has two grown sons affected with X-linked ichthyosis. Dan sends out an e-newsletter. Included in his most recent newsletter, was information about ichthyosis and FIRST. He provided a link to our website so that recipients could make donations. 
  
Sarah Hodgkinson of Woodstock, Ontario, Canada is an avid crafter/scrapbooker and has a very active blog on the web. She entered a contest, Elmer’s Crafting Challenge, in which the prize is $1,000 for the educational charity of her choice. If she wins, Elmer’s will donate $1,000 for FIRST’s new educational scholarship. 
 
In addition, Sarah was the featured designer at Scrapbook & Cards Today magazine twice during Ichthyosis Awareness Week. The President and Founder of Scrapbook & Cards made a point of directing people to Sarah’s blog about Ichthyosis Awareness Week. 
 
You may remember that Sarah created beautiful awareness bookmarks that FIRST sold at the Family Conference in Orlando. Sarah’s 6-year-old daughter Ema, who is affected with CIE, took the bookmarks to school with her and gave them to students and teachers to raise awareness. They were terrific gifts to give out. These bookmarks are also available for sale at FIRST's Marketplace.
Marc Benedetto of Wantagh, New York, is an 8th grader affected with lamellar ichthyosis. His Home and Careers class needed to develop a product and sell it, donating the proceeds to charity. A classmate of Marc’s suggested the Ronald McDonald House. Marc presented a case for choosing FIRST. After a vote, the class almost unanimously voted to have the proceeds donated to FIRST. They sold brownies during the school day and raised $107.00! This is a great way to educate the children about ichthyosis and FIRST.
Susan Anadale of Emmitsburg, Maryland, has a 5-year-old son, Peter who is affected with lamellar ichthyosis. Susan has a very active homeschooling blog on the web. During Ichthyosis Awareness Week, she posted three different items about ichthyosis and awareness week, and provided a link to FIRST’s website. This is a great way to educate people all over the world about FIRST and ichthyosis. 

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