Wednesday, April 4, 2012

'Ichthyosis Awareness Month' Starts on May 1st

This blog was created with the determination to raise awareness for Ichthyosis. Since May is Ichthyosis Awareness Month, I plan on participating in a fundraiser which will benefit the FIRST Foundation. As I have mentioned in an earlier post, I plan on pursuing the event, which was created by the FIRST Foundation, "It Makes Cents to Help FIRST".

"It Makes Cents to Help First" is a coin collection fundraiser. I plan on putting collection jars in many local businesses, restaurants, staff rooms and teacher rooms.  I will make collection jars with customized labels with some information about Ichthyosis to help educate others. For anyone who lives in the area and would like to participate, I will provide jars for you. If you would like to participate but live out of town or state, PLEASE contact me and I will send you my customized label so you can put it on your own jar. I appreciate all of your help in order to collect money for this worthy cause. Every penny collected will be donated to the FIRST foundation in Evan's name.

Since I had never heard about Ichthyosis until Evan was born, I realized how unfamiliar this disorder may be to many people in this community, state, country and world.  A mission to raise awareness does so much good for so many reasons. Educating others in our community will be such a benefit for Evan as he grows up and starts going to public school. For others to have an understanding on the facts about Ichthyosis and not the misconceptions, will help them become more comfortable about Evan's condition as well. Most people who stop to ask questions while I am at the grocery store, a public event or park want to know why Evan's skin is so red. About 95% of my experiences have been with curious yet polite strangers. The first question they ask, after I explain that Evan was born with a genetic skin disorder, is 'will he grow out of it?'  How I wish I could say yes and that was the case.

I believe that raising awareness in our community, surrounding towns and even state can help make Evan's life a bit easier. Once people are aware it may not seem so 'out of the ordinary'. By educating others is also a way of educating myself since there is still a lot more I know there is to learn about this lifelong disorder. And now I am ready and eager to not only raise awareness but to also raise money for a good cause.

So here is the plan....

Email me, De De, at In the subject box please write 'FIRST Fundraiser'. Let me know if you would like to participate so I can begin to gather and create collecting jars. If you live out of state and would like to participate, please give me your address and the amount of labels you will need for collecting jars so I can send them to you. During the month of May put your collection jar(s) out in your workplace or business to help collect donations while educating others about Ichthyosis. You can leave your jar out for 1 week, 2 weeks or for the whole month of May, it's up to you. At the end of the fundraiser the counting begins!!! You can choose to count the change and then write a check out to the FIRST Foundation for that exact amount. You can then send the check to me so I can send all of the donations in at once and tally up a grand total! Or if you live in the area and do not want to count the change, you can give your collection jars back to me, I will tally up your donations and let you know how much your workplace/business earned for the FIRST Foundation. Remember EVERY PENNY COUNTS!!!! :-) 

All donations can be sent to: Evan's FIRST Fundraiser- PO BOX 500 Goshen, CT 06756. All checks payable to the FIRST Foundation.

This is the first time I am 'hosting' a fundraiser for FIRST, so I am trying to make sure I work out any kinks. I am very excited to raise awareness while earning donations for this amazing foundation. Your efforts will help make it possible to fund research to find better treatments and eventually a cure for this lifelong disorder.

This is similar to what I will make for labels:



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