It's That Time of Year

It's time for the annual NFED Raffle Ticket fundraiser.
What is the NFED you may ask? National Foundation for Ectodermal Dysplasias

Here's a little interview I had with Tyler to see what he had to say about the NFED.

Mom: What does the NFED mean to you?
Tyler: It's an organization that provides health needs for people with EEC or ectodermal dysplasia.
Mom: Why is it important to you?
Tyler: Because it helps people with ectodermal dysplasia AND because I get to be with my friends at the NFED National Conference each year.

Tyler with his friends Brett (Oklahoma) and Zemery (Virginia)

Mom: What is EEC (Ectrodactyly Ectodermal Dysplasia Clefting Syndrome) to you?
Tyler: It is a syndrome. I've had too many surgeries to name dealing with my hands, feet, ears, eyes, and teeth. I also don't sweat very much and can get overheated.
Mom: How does the NFED help you?
Tyler: It provides money for people to help with their health needs. It is a support for me because I meet other kids and adults that have the same syndrome I do.

Tyler's brother Grant - also affected by EEC

Here's how the raffle works:
Each raffle ticket costs $1 ---- they come in books of 5 (5 tickets for $5)
Raffle Prizes:
1st Place Ticket - $1,000
2nd Place Ticket -- $300
3rd Place Ticket -- $200

Just send us a check made out to the NFED and we'll fill out your tickets and return the stubs to you. Please send your check by February 25 so we can get the stubs filled out and sent to the NFED in time. The drawing will be held on Thursday, March 11th at noon CST at the NFED office in Mascoutah, Illinois.

Feel free to check out the NFED website at www.nfed.org to find out more about the organization. Ectodermal dysplasias are a rare genetic birth disorder with over 150 different syndromes identified. The NFED is independently funded, meaning that they do not receive government funds to operate their annual budget…more bluntly, they work very hard to raise every dollar of the budget each year. They provide a variety of support to families, educational opportunities and materials to families as well as medical professionals, and fund much needed research in the hopes of finding a cure. Of every dollar the NFED receives, 93 cents goes directly back to the families --- what an incredibly high percentage (93%) for a non-profit organization. Their focus is their families and giving back to them.