Thursday, March 29, 2012

Charity Around the World: Children's Tumor Foundation

Charity Hopping
Around the World

Children's Tumor
Ending Neurofibromatosis Through Research

Special thanks to blog hop sponsors:

Mercedes Christesen was a bright, bouncy, cute little girl with a beautiful complexion sprinkled with freckles across her nose.  No one would ever have suspected she had a mutant gene just waiting to fill her life with dread and pain.  She is one of every 3,000 births with a genetic disorder called neurofibromatosis (NF).  30% is by spontaneous mutation.  No one else in our family has NF.  But once a person is born with NF, she/he has a 50% chance of passing that on.  Both Mercedes' daughters have NF, too.

So what is neurofibromatosis?  The best way to understand it is to go to the Children's Tumor Foundation website.  You'll find lots of information there on this genetic disorder, as well as how you can help.  Here's a brief overview from the home page:

With most disorders and diseasees, there are poster children that tug at our heartstrings. With NF, you won't find many people willing to put their pictures out there. It's a disfiguring disease caused by tumors that grow on the nerves both inside and outside. Many of these tumors are extremely painful in the physical sense, and some turn cancerous, but that's nothing compared to walking into a store and seeing people turn their heads with horror written all over their faces, some covering their children's eyes.

But no matter how many tumors grow or where those tumors are located, some people are just beautiful, and Mercedes is one of those people.  You can find more beautiful people and their stories on the NF Heroes page

Royalties of the print book go to
Children's Tumor Foundation

Because of the courage of these people in spite of obstacles that would bring most of us to our knees and keep us hiding in our houses with the draperies closed, I dedicated my first book to the cause.  The NF Heroes in my acquaintance are a fun-loving bunch, so Faery Special Romances is a fun fantasy, complete with faeries, romance, and adventure:

Once Upon A Time, the faery princess Keely tried to match . . .
. . . a misguided faery maiden and a surly but handsome knight, the pirate Devlin Angel and the ever-hopeful Myra, a faery under the ruse of Lord Kembell and a lady of noble birth, a blacksmith and a duchess, a flapper and a barnstormer pilot . . .
But can Keely keep her own heart? With faery magic, anything can happen!

This enchanted carpet-ride features ten romantic faery tales, ten happy couples, and a journey through history with Keely, who grows from a kindergartner to a beautiful young faery woman.

Faery Special Romances is a sweet romance for adults, appropriate for teens, too.  It won the Night Owl Romance Award for Best Print Sci-Fi/Fantasy Romance, the Coffee Time Romance Reviewers Award, and several other awards and Top Picks as well. Try it. :)  (print, ebook.)
Win a Free eBook!
Six Chances to Win
Winner's choice of any of these ebooks:

Hearts of Owyhee series (western historical romance):
Fantasy romace:

All you have to do to win is leave a comment, but be sure to leave your email address in case you win, or else I'll have to choose another winner.
Note: some books are Kindle only.  Winners will be drawn April 5, 2012, noon Pacific Time.
Special thanks to Children's Tumor Foundation and all the great work they do!

Want to win more stuff? Visit these participating sites!


Shannon said...

I didn't know about this organization. I have a dear friend with NF 2 - similar but different. She has had many struggles over the years but is still such a beautiful person. Thank you for sharing this organization with us.

bas1chsemail at gmail dot com

mercedes christesen said...

Shannon if your friend is on face book have her friend me... just have her put NF in a message.

katsrus said...

Sounds like a wonderful charity. I have not heard of this one before. Thanks for sharing with us.
Sue B

Miss Skunk said...

Another illness that I would love to see eliminated. Give them lots of tender hugs, and one from me.

John Walsh said...

Thank you very much for the work that you do too get the word out about NF. I have NF and so does my daughter Jennifer Walsh. Our son Patrick John Walsh loss his battle with NF related cancer on June 21, 2010. He was 33 yrs old. He use too say "Keep up the fight." and we have been by going too local events and helping out and sharing our story.

Anonymous said...

My stepson was diagnosed with NF when he was 9 months old. He had a brain tumor removed in his adult years but the biggest thing about that year was that he was putting together a country music concert. Any parent who shields their children's eyes from seeing a person with NF is doing quite a disservice to their child.

Lauren Mackesy said...

I had never heard of this before now. Such a horrible thing to happen. More awareness needs to be given to this.
Lmackesy at gmail dot com

Caroline Clemmons said...

Jacquie, When I was bookkeeper for the county tax assessor, a child with NF came in with his mom. She said some people were so cruel to him. What a difficult life these people have!

On April 11-17th come by my blog for Autistm Awareness. I have a blog on autism on April 13th.

Sophia Rose said...

What a beautiful strong lady to put herself out there for the cause. Thanks for bringing this disease to my attention.

Wendy Delaney said...

What a beautiful and strong lady Mercedes is. So is her mom. Thanks for spreading the word about NF.

ruthhill74 said...

Thanks for the info and the giveaway!

Krysykat said...

Thanks for the information :)