If you haven't heard already, we are organizing an event "Huxman Run 2 Sweat", a benefit run for the National Foundation for Ectodermal Dysplasias (NFED) on October 1, 2011 in Moundridge, Kansas. This organization is where we have learned so much about EEC and they've helped us with questions and concerns regarding the health of Tyler and Grant. Each summer we travel to their national family conference for three days and have made some incredible friendships through this journey. There are a number of ways you can support our event with the first being to pray for a safe race where the participants and volunteers have a great time. Another way would be by participating in either the 1 mile walk/run at 7:45 am, or the 5K or 10K which begin at 8:30 am. Many, many volunteers are needed to make this event a success and you could help us in that way. The last way is obviously the reason we are organizing this event . . . to raise funds and awareness for the NFED. If you are interested in contributing to the NFED through our Huxman Run 2 Sweat event, you can do so in a couple different ways: send your donation directly to us with the check made out to the NFED, go to our current website www.firstgiving.com/fundraiser/deannhuxman/huxmanrun2sweat, or go to www.nfed.org - click on Make a Donation on the left hand side - fill out the first page with your information - and then on the second page where it says source click on the drop down menu and choose Run 2 Sweat - Huxman Family. Our goal is to raise at least $5,000 for the NFED and we are confident we'll do that. Please read the following information for a better understanding of why Run 2 Sweat. I'm also including a copy of the registration form at the bottom if you are interested in printing it out (I hope it would work to print from this). Thank you very much for your support of our family and this event. Feel free to share this with friends. Our ultimate goal is to raise awareness about ectodermal dysplasias and the NFED and the best way to do that is through word of mouth.
Why Run 2 Sweat????
When most people run, there is an expectation that sweating will occur. What if when running, a risk of overheating occurred rather than sweating? This is a reality for some children, including Tyler and Grant Huxman. Tyler and Grant both have EEC Syndrome (Ectrodactyly, Ectodermal Dysplasias Clefting Syndrome), which is very rare. EEC is one of over 150 different types of ectodermal dysplasias which affect about 1 in 10,000 births and are inherited disorders that involve defects in the hair, nails, sweat glands, tear ducts and teeth.
The purpose of the Huxman Run 2 Sweat event is to raise awareness as well as funds for the National Foundation for Ectodermal Dysplasias (NFED), a non-profit organization with a mission to empower and connect people touched by ectodermal dysplasias through education, support and research. The foundation also provides financial support, advice, guidance and research into ectodermal dysplasias. All of their funding comes from private donations and grants. They receive no federal funding.
The NFED is valuable to many families dealing with ectodermal dysplasias , including the Huxman family. Helping to raise funds is a way to give back. Please consider helping out in any way you can, either by participating in the run, donating to the cause, or volunteering to help with the event on October 1, 2011.
The Huxman Run 2 Sweat event will occur October 1, 2011 beginning with the 1 Mile Walk/Run at 7:45 am followed by the 5K/10K at 8:30 am. All events will begin at Moundridge Middle School, 526 East Cole, Moundridge, Kansas and end at Black Kettle East Park, corner of Krehbiel St. and Goering St., Moundridge, Kansas (about 2 blocks from the school). Post race food, drinks, entertainment, and awards will be at Black Kettle East Park.
Registration Form
1 Mile Walk/Run ($10) - begins at 7:45 am
5K ($25) – begins at 8:30 am
10K ($40) – begins at 8:30 am
Cash Donation (Any amount) $ ________
Willing to volunteer before or day of event
Willing to volunteer before or day of event
Name:
Address:
Phone #: Email:
T-shirt size: YS YM YL S M L XL XXL
Please complete this application and return it with payment to:
Huxman Run 2 Sweat
11409 NW 72nd St.
Moundridge, KS 67107
Please make checks payable to :
NFED (National Foundation for Ectodermal Dysplasias)
Questions? Call Chris or DeAnn Huxman @ 620-386-0522 or 0523 or
To learn more about the run go to www.firstgiving.com/fundraiser/deannhuxman/huxmanrun2sweat
For information about ectodermal dysplasias, log into www.nfed.org
Please complete the waiver section on the back also. Thanks!
Waiver Release
You understand that participation in the Huxman Run 2 Sweat event is potentially hazardous, and that a registered party should not participate unless they are medically able and properly trained. You understand that events may be held over public roads and facilities open to the public during the event and upon which hazards are to be expected. Participation carries with it certain inherent risks that cannot be eliminated completely ranging from minor injuries to catastrophic injuries including death. You understand and agree that in consideration of being permitted to participate in the event, you and any registered party, the heirs, personal representatives or assigns of you or the registered party do hereby release, waive, discharge and covenant not to sue active for any and all liability from any and all claims arising from participation in the event by your or any registered party.
Signature:
Date:
