The Foundation for Children with Atypical HUS

I know many of you are doing wonderful things to raise money and awareness. I noticed that the Kidney & Urology Foundation of America is having an auction on their website (mostly expensive items), and it happens to be something I have been thinking about. I checked out eBay Giving Works. It seems that once a charity is registered with eBay, anyone can post an item for sale donating 10-100% of the sale to the designated charity.

I think it could be a great way to connect geographically distant people and an opportunity to get rid of the good stuff sitting in the garage or offer something handmade. For publicity's sake it might be best to coordinate an auction around a particular date or month, but individual items could be listed at any time.

There is more information here:
http://www.ebaygivingworks.com/nonprofit-info.html

Anyone else think this is a good idea? Other thoughts?

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I think this is a great idea, Grace!
























Great idea, Grace. Yes, we could declare a "National e-bay treasure sale for AHUS". Someone much more clever than I could come up with a name that is actually catchy!
Hey Grace-
It's a great idea! If you are on FaceBook, you'll notice that our FB page (see our Links box on this site's Home Page)has a very supportive "Fan Base" that isn't even represented here, so perhaps we can call on these kind and generous folks to assist in this endeavor. To expand on your idea, I've already been pondering setting up a charitable giving account somewhere... perhaps at "goodshop.com" . If we register there, when aHUS families/supporters shop online at Amazon.com or eBay (or a ton of other sites) they can automatically donate a % to our charity. On the surface, it seems like a good idea.... Another option is "we-care.com", similar situation to goodshop.com. This is as far as I've gotten in my research, no red flags yet, but I haven't gotten through all the fine print. (Yesterday I opened my email account to find 41 messages between Skyler's school and aHUS messages!) Love to have someone look over these two sites to compare, or perhaps there's another "giving network" that on a daily basis would work better for The Foundation for Children with Atypical HUS (hint, hint) !!
Sounds good to me too! Anything to help raise money for the foundation. I think we should also all share local fundraising activities/ideas that we could all do in our own home towns.
I think that is great idea!!
I think that's a great idea too - all of them. I know Heather has had very successful fundraisers for years and Bill anc Cheryl do awesome at their trivia night - the girl I job share with actually lives in St. Louis oddly enough so she was able to go last year and had a blast! We did the hike and fun kid day and did well last year. They are ALOT of work though!!

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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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