My family and I attended the 19th Annual NFED Apple Classic Golf Tournament on June 6th. There was quite a turn out of golfers and the day was absolutely gorgeous! The temperature hovered around 75 degrees, so we were able to keep Zane outside for a good portion of the day. He did overheat a few times, and we had to take him into the air conditioning, but for the most part, he did well.
As Many of you may know, Zane and I are affected by the Hay Wells Syndrome of the Ectodermal Dysplasias. The ED’s are a group of approximately 150 heritable disorders that affect the ectoderm, the outer layer of tissue in a developing baby.
One of the ways that we are affected is that we are unable to sweat properly. I sweat a very little bit on the palms of my hands. Zane is unable to sweat at all, and therefore his body is unable to regulate his temperature when exposed to heat. Which is why he overheats when it is over 75 degrees outside.
We have to keep our thermostat at 72-73 degrees year round because of Zane’s thermoregulatory problems.
Last year, for the fifteen minute ride to church, we literally had to pack his carseat with ice packs (between the plastic and the fabric) on the way there and then carry a cooler with ice packs for the return trip home. We also kept a cooling blanket with us whenever we were not at home.
We are already having issues with him overheating this year. And it is more challenging this year, because is is more mobile. I can’t simply wrap him in the cooling blanket and expect him to stay there. He is constantly on the move, and constantly wants to be outside. So, we carry mister bottles, portable battery operated fans, the cooling blanket, etc, etc in a thermal bag with us everywhere.
The fact that the weather was so nice for the tournament was a real blessing!
Here are a few pictures from the tournament…
Zane with his own golf clubs.
Zane playing golf on the putting green.
My niece, Delores, golfing.
My nephew, Dyllan, and Zane on the putting green.
Dyllan, Danielle, and Zane golfing.
My niece, Danielle, next to her original artwork that she donated to be auctioned off for the NFED.
A fun time was had by all!
You have to see this motorcycle that was painted with the NFED colors and logo…
The owner of the bike has a daughter that is affected by Ectodermal Dysplasia.
I am always wanting to help the NFED raise funds, so I wanted to share with you an opportunity that has been presented to us.
*New Vaseline Campaign to Donate Up to $50,000 to NFED
We Need Your Help to Prescribe the Nation
The National Foundation for Ectodermal Dysplasias has partnered with the Vaseline Skin Fund to help individuals affected by ectodermal dysplasia and their families. It is a fund created by the Vaseline brand to support various charities.
The Vaseline brand has recently launched a Prescribe the Nation campaign for its Vaseline Clinical Therapy lotion, a prescription-strength lotion available without a prescription. For every e-Card you send to friends and family “prescribing” Clinical Therapy, Vaseline will donate $5 to the NFED, up to $50,000 to help children and families attend our National Family Conferences.
It’s easy to do…
1. Go to www.prescribethenation.com
2. Choose “Send e-Cards to Help Skin Fund” from the menu.
3. Follow the directions.
Help Spread the Word
1. Email your friends and family and invite them to send e-Cards, too.
2. Post a link to Prescribe the Nation on your blog or Web site.
3. Post the information and link on your Facebook or MySpace page.
It takes just a few minutes to do, it doesn’t cost you a thing, and it means great awareness and funds for the NFED. The campaign runs from April 22 – August 1, 2009 so send your e-Cards today!
History of NFED and Vaseline Skin Fund Partnership
The mission of the Vaseline Skin Fund is to improve the lives of those affected by skin conditions by providing them with better access to the specialist knowledge, advice and support they need.
Our partnership with the Vaseline brand began in 2006. Since then, Vaseline has contributed $25,000 to help support two National Family Conferences and a Professional Symposium for Dermatologists at the University of Iowa. Vaseline also produced and donated a promotional video for NFED. Watch Video
To learn more about the Vaseline Skin Fund, visit their Web site. Click Here
We are gr
ateful to Vaseline for their generous support.
*information copied from the NFED website at http://nfed.org/news_latest.asp
So, how can I get you, my blogreaders, to go send a few e-cards?
Well, to make it worth your while, I thought I would offer you a coupon for $$$ savings in my store at Digital Scrap Design.
Lady V dZine