The Foundation for Children with Atypical HUS

Hi all,
We are getting ready to start designing super cool notecard/generic gift packs that will be sold as a fundraiser for the foundation. The cards will be trendy and cool so that anyone might want to buy them but also have elements that reflect the spirit of the kids that fight this disease. That's where I need your help. I need inspiration!

A couple people have sent me drawings that their kids have drawn, which is great and I'll happily take more! Other things that could help are:
> Inspirational sayings or bible versus that have helped your family. Maybe a song with cool lyrics?
> Maybe there is a symbol or image that is meaningful to you or your kids?
> Your kids favorite things? (ie. a certain flower or animal?)

It doesn't matter how abstract the idea is. Email me anything or any idea that is meaningful to you. You never know what idea it may trigger in the design process or how I can work it in. Just message me and if you have attachments, I'll send you my email. Please send by this weekend! Thanks!

Jodi

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Comment by lisa ann peterson on November 15, 2009 at 3:25pm
what if the tail of the dragon fly looked like the last 5 black pearls on our bracelets....just a thought
Comment by Zofia on November 10, 2009 at 3:09am
Beautiful story.
Comment by Cheryl Biermann on November 4, 2009 at 12:31pm
Thank you for sharing this beautiful story, it is really a reflection of our lives.
Comment by Phyllis Ann Talbot on November 4, 2009 at 11:39am
I really love the dragonfly story - it's precious!
Comment by Jodi Kayler on November 4, 2009 at 10:09am
Love it!
Comment by Linda Burke on November 3, 2009 at 11:52pm
What a beautiful story, and one that so accurate reflects how I feel.... thanks for sharing this.
Comment by Tony Silva on November 3, 2009 at 8:49pm
Hi Jodi,
We've always used the symbol of a dragon fly since our son Noah passed away. We find the story one that brings us hope...
Once, in a little pond, in the muddy water under the lily pads, there lived a little water beetle in a community of water beetles. They lived a simple and comfortable life in the pond with few disturbances and interruptions. Once in a while, sadness would come to the community when one of their fellow beetles would climb the stem of a lily pad and would never be seen again. They knew when this happened; their friend was dead, gone forever.

Then, one day, one little water beetle felt an irresistible urge to climb up that stem. However, he was determined that he would not leave forever. He would come back and tell his friends what he had found at the top. When he reached the top and climbed out of the water onto the surface of the lily pad, he was so tired, and the sun felt so warm, that he decided he must take a nap. As he slept, his body changed and when he woke up, he had turned into a beautiful blue-tailed dragonfly with broad wings and a slender body designed for flying.

So, fly he did! And, as he soared he saw the beauty of a whole new world and a far superior way of life to what he had never known existed. Then he remembered his beetle friends and how they were thinking by now he was dead. He wanted to go back to tell them, and explain to them that he was now more alive than he had ever been before. His life had been fulfilled rather than ended. But, his new body would not go down into the water. He could not get back to tell his friends the good news. Then he understood that their time would come, when they, too, would know what he now knew. So, he raised his wings and flew off into his joyous new life!
Comment by Heather Still on October 29, 2009 at 6:55pm
I have no creativity and Ryan still thinks stick figures are art, so we're not much help there. My daughter got the art gene and loves to draw so she may have something for you. My sister just had this quote on her Facebook status and I don't know where she got it, but it's definately my way of thinking and pretty much how I live life. "Things turn out best for people who make the best of the way things turn out."
Comment by Colette Ann Frysz on October 29, 2009 at 1:59pm
Jessica and her sister Angie would always draw rainbows. When once I was asked by some religious ed kids I was teaching what I thought God looked like, I told them to me God is the rainbow. It is a never ending array of all colors and hues. My daughters always had a rainbow drawn somewhere. The brighter the colors were those were the ones Jessica would use. So for us it's a rainbow.
Comment by Jessica Olivia Frysz on October 29, 2009 at 9:31am
I would be happy to participate. But, I need to know where I can send in my contribution.

WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!

The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.

Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.


NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.

************************

NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.

 

Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
• • • • • • • • • • • •
  
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.

  

  
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.



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