Happy New Year everyone! January 1, 2016 has come and ready or not it is here. Of course it is more than just the first of the month here on It’s Just Life. It is Comments for a Cause day. Can you believe that we have been doing Comments for a Cause on the blog since April 2011? We will be going on 5 years and that is a lot of causes that have been highlighted over the years. Maybe one of my January posts will be a post listing each cause. What do you think? I think it would be fun to see them all listed in one post.
Image from Sharing House -Transylvania Christian Ministry
This past month I have focused on a local charity here in Brevard. This month it has been all about sharing at the Sharing House where compassion and crisis assistance is the focus. We are thrilled to be able to make a donation of $151.50 to Sharing House for all that they do in our area. Thank you all for taking the time to comment.
Sometimes I learn about new causes from friends and the cause for January is one that is near and dear to the heart of one of my new friends here in Connestee Falls, Marci. Marci has been instrumental in doing fundraising for years for the National Foundation for Ectodermal Dysplasias and has become involved with this organization as a result of her son, Christopher, being diagnosed with Ectodermal Dysplasias.
So what is Ectodermal Dysplasia?
The ectodermal dysplasias are inherited disorders that involve defects in the hair, nails, sweat glands and teeth. When a person has at least two types of abnormal ectodermal features—for example, malformed teeth and extremely sparse hair—the individual is identified as being affected by ectodermal dysplasia.
The conditions are a remarkably diverse group of disorders which may also affect other parts of the body. The ectoderm contributes to the formation of the lens of the eye, parts of the inner ear, the fingers and toes, and nerves, among others. Therefore, ectodermal dysplasia may cause these parts of the body to develop abnormally.
There are more than 150 different types of ectodermal dysplasias. Symptoms range from mild to severe. Only in rare cases does ectodermal dysplasia affect lifespan and very few types involve learning difficulties.
The mission of NFED is as follows:
Our mission is to empower and connect people touched by
ectodermal dysplasias through education, support, and research.
There are no cures but there are treatments available to help with the symptoms. Research is being done to find out more about the causes and treatment so any money that is raised goes to help with those efforts.
When a disease like this affects someone you love it becomes personal. Very personal. I think that that is why some of the causes that I have highlighted on It’s Just Life have hit a chord with so many of my readers. They have had family members or friends who have had that disease and when that happens that becomes the cause that is important to them and with good reason.
I am so happy to be highlighting another wonderful cause and urge you to go to the website of the National Foundation for Ectodermal Dysplasia to find out more about what the organization is doing to help those who have this disease. You can also check out their Facebook page by clicking here.
Please comment often this month. For every comment on ANY post during the month we will make a donation of 50 cents to NFED. I post 5 times a week normally so if you come back and comment on every post that adds up. Get your friends to stop by and do the same and we can reach the cap donation of $500. This is a great organization that offers some hope and help to those who struggle daily with a disease that seems so unfair at times. Thanks for stopping by today. Your comment counts.
29 Comments
Leave a commentHappy New Year, Beth Anne. Your Comments for a Cause is such a wonderful project. I think it would be nice to have a post in which you list all the causes you’ve helped.
I hope it’s a wonderful year for you and yours!
Thank you and Happy New year to you and yours!
Thanks for all you do to bring attention not only to the causes that need our assistance, but also to the good that so many people are doing.
Exactly! We hear so often all the bad things and there really are a lot of great things going on out there in our world that need to be highlighted. NEFD is one of those and I am so happy to share it.
It seemed to me that “Sharing House” was very appropriate for “Comments For A Cause” as that is exactly what you do on a monthly basis. NEFD is but another in the long line of worthy organizations that you, in your(and Chris’) generosity, will benefit from at CFAC. After reading your description about the disease I was thinking that early detection must be a critical factor in making those who are, and who will be afflicted, more comfortable with their situation. As is your wont you have chosen another worthwhile cause. Good wishes for many comments this month. Happy New Year to you, your family and all of those whom you consider your friends.
Happy New Year, Jake! Thanks so much for stopping by and checking out the latest cause. I think you are right that early detection is important in helping the individual have the tools to deal with what is coming down the road. This organization seems to do a great job with providing info and help where needed.
My sister’s sister in law had this and ended up passing away a few years ago. It was the first time I ever heard of it. I think it’s a fabulous cause!
Oh wow—this is the first person I ever knew who had it and it is such a tough disease because it makes the person look different often times and that is always such a challenge in our world where we focus so much on appearances. I am thrilled to be able to share this info with my readers this month and make a small donation.
Well done, once again. In spite of moving and Christmas and a lot of travelling you still managed to pull this off. I am so impressed. <3
Well I am not sure I pulled much of anything off. I have a lot of stuff left undone but my attitude is much more laid back right now.
Happy New Year Beth Ann; what a wonderful idea you had 5 years ago and thanks to you for making us aware of all these wonderful causes. Wishing you and yours a wonderful 2016.
Happy New Year to you as well! Thank you so much for taking the time to stop by! It is my privilege to do this on the blog.
You’re one amazing lady. What a wonderful cause. Happy New Year!
Thank you! This is a good one, don’t you think? I am excited about highlighting it.
It is. 🙂
Thank you, Beth Ann! I don’t know if I told you this, but 25 years ago, when Chris was diagnosed at the age of 9 months, scientists had just started doing research on this. Over the years they were able to isolate a “marker” on a certain gene. That lead to identifying a protein that was missing. That lead to testing on mice that had Hypohidrotic Ectodermal Dysplasis by giving them the protein, and they grew hair & teeth! After that, they tested it on dogs. That worked! About a year or 2 ago, they started clinical trials on humans – injecting the protein, in utero or within a couple weeks of birth. It remains to be seen if this will work on humans, but we are ever hopeful. If all goes well, Chris’s children may be free of the concern of passing on that gene to their children.
That is amazing and exactly what research does— it creates hope for future generations. Thanks for giving me some info about this that I had no idea about!
Happy New Year to you, and thank you for continuing faithfully in your Comments for Cause monthly project.
I love that you are helping out a new friend for this month’s Comments for a Cause! I have never heard of Ectodermal Dysplasia before. I love how this program makes me aware of new causes.
Another worthy cause as per usual! Looking forward to all the causes of 2016… Happy New Year!
[…] tea is and how you take it. Sugar, honey, plain? Remember all comments this month go to our Comments for a Cause, NFED. Don’t forget that every comment […]
I have never heard of this! That is a great idea for a post.
Thanks, Patti!
Thank you so much for choosing the NFED, and thank you Marci for the suggestion! What a wonderful and charitable channel to get others to learn about not just the NFED but other great charities out there. We are so honored. If anyone would like more information about what we do, please visit our website at nfed.org and be sure to give us a like on our Facebook page, facebook.com/NationalFoundationforEctodermalDysplasias. Next month is Rare Disease Awareness Month so be sure to check our Facebook page to find out more about how we support our families and individuals affected with Ectodermal Dysplasias. Thanks again!
Thank you, Brittany, for stopping by! I am loving that I get to highlight some really great places and can help educate people about some things that they had no knowledge of before. Thank you for all that you are doing to help those affected and to raise awareness.
[…] Do you have any fun Florida facts to add to my list? Feel free to add them in the comments section and remember that all comments go to support our Comments for a Cause this month. […]
NFED has been a huge help for our family. When my youngest son was diagnosed with XLHED we turned to NFED for answers. We cannot seem to understand where this came from, I have no family history of HED. We were knocked off our feet when our pediatric dentist told us what was happening with our son. We were told about NFED. They educated us about this disorder and they gave us hope. We are looking forward to meeting everyone in person one day and personally thank them. For now my family and friends are helping NFED by hosting our 2nd Annual Sweat IT Out 5K. The first was a huge success,$6,000.00 to NFED. Thank you NFED for being there for us!
Jamie–thank you so much for stopping by and sharing your story about your son. I love that you are doing a 5K to help promote awareness and raise funds —it does sound like it was a huge success. Way to go! Thanks again for stopping by–come back anytime!
[…] Do you get caught up in the political fever? Do you watch every debate with interest or do you binge on Netflix on debate nights? Would you “caucus” if you could? Have you “caucused”? I would love to hear all about it in the comments and remember each comment will garner 50 cents for our Comments for a Cause of January –NFED. […]