The Atypical HUS Foundation

FACEBOOK FANS: iGive.com and You CAN Make a Difference Today !

Actually, everyone reading this can make a dramatic difference in the lives of aHUS patients and their families! How often do you use an internet search engine such as Google or Bing to explore an interest area or to find information on the Web? Do you ever shop online? Join our aHUS patients and families at iGive.com and iSearch.iGive.com and - at absolutely no cost to you- The Foundation for Children with Atypical HUS will receive a cash donation. Here's how it works.....
At iGive.com, you enter through their website to shop at at more than 750+ online retailers, including Amazon, Gap, JC Penney. QVC, Best Buy, eBay, and hundreds more! When you enter their shopping portal, please enter "atypical HUS" to register us as your favorite charity and iGive.com will automatically send a percentage (from 0.8% to a whopping 26.3%) of your purchases to The Foundation for Children for Atypical HUS. That's it.... so simple, yet the pennies quickly could add up with more than 200+ Facebook Fans to support our aHUS research and community goals.
Coupon codes and discounts are gladly accepted at iGive.com and you can still scope out the best deal by comparison shopping! If you're surfing the web and use their companion site at iSearch.iGive.com, they'll donate 2 cents for every website you surf through. How easy is that? If you're going to use a search engine or shop online anyway, why not benefit our aHUS families and patients at the same time? It's free and takes very little effort....heck, iGive.com even lets you download a toolbar that automatically links you to iGive.com and actually displays your (tax deductible!) contribution totals.
Know any small business owners or office managers? Hey, they order office supplies all the time, right? At iGive.com, you can shop online at Office Depot or Staples for example and score a tax deductible contribution to The Foundation for Children with Atypical HUS. (For example, 123 Injets offers to send The Foundation a 13.6% donation based on your total purchase with them.)
If you know anyone who travels regularly for business (or know a friend/relative who does), ask them to register us as their favorite charity at iGive.com and book flights/hotel through Expedia or Orbitz or car rentals through Enterprise. Perhaps the corporate office can send office flowers through 1-800-flowers..... use your imagination!
As the holidays approach, many of your extended family members will shop online or travel - wouldn't it be wonderful if they found the perfect present or booked a flight home and at the same time donated to aHUS through iGive.com? Please let everyone know how they can help, whether it's getting Fido's needs at 1-88-PetMeds or a gift subscription for Aunt Gladys at MagsForLess (10% donation) or ValueMags (20% donation). A subscription to the Wall Street Journal nets a hefty 26.3% donation - plus a nice tax deduction to boot!
You'll find a link to iGive.com in the Links Box on the Home Page, or you can type in iSearch.iGive.com and start surfing online - both are EASY great ways to support the work of The Foundation for Children with Atypical HUS. Why? We need your help, it's quick and easy for you to do (asking all your friends,neighbors, co-workers, etc. to join in and help us out) and because.....

Thanksgiving, after all, is a word of action. (W. J. Cameron)

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Comment by Cheryl Biermann on November 12, 2009 at 11:08am
Okay, this Christmas will be my first on-line shopping experience...even when I try to buy certificates on-line through our school site, things always get messed up. I'll need some teenagers watching over my shoulder for a while I guess. Even though they've never shopped this way, they seem to have the magic touch with my computer-getting it to do much more than I can! Wish me luck.
Comment by Linda Burke on November 11, 2009 at 11:05pm
Hi Phyllis!
A little 'retail therapy' - just what the doctor ordered! I just sent some emails from iGive.com that I adapted a bit, giving links for to help online shoppers take that extra click and chose aHUS to receive a percentage of sales donated by 750+ retailers like Amazon, Best Buy, etc. Hope you can pass the email along to friends and family on your email list, as those pennies could sure add up quickly during the holidays!
If you go to iGive.com, below the store logos and the Facebook logo you'll find a "contact us" link that has FAQ such as links and banners. On Facebook, you'll find an app as well as an entire iGive.com fan page with additional info. Thanks for getting everyone on board with this - little things DO mean a lot !
Comment by Phyllis Ann Talbot on November 11, 2009 at 8:26pm
Linda - hey there - this is awesome!! course I'm bummed b/c I just bought a ton at Toys R Us a couple of days ago for x-mas - boo!! But Snapfish donates 6.4% - that's WAY COOL!!! Anyway - trying to figure out if there's a way to copy the little box on the left side of the main page into facebook or an e-mail? That's how I added this to my browser and seemed SUPER easy - this may be more of a question for your brother? Just let me know if you can - think I have a ton of people that are buying stuff for x'mas and would love to do this - just trying to make it easy - when I clicked on that - it automatically brought in Foundation for Children with AHUS as the beneficiary and everything - thanks for doing this!

IN REGARD TO MEMBERSHIP REQUESTS

To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from info@atypicalhus.org.

The Atypical HUS Foundation is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to info@atypicalhus.org

Membership is open to patients, family, friends, caregivers research and medical personnel.

WELCOME - JOIN US!

The Atypical HUS Foundation 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.

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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 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact info@atypicalhus.org with your request and details.

 

 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at www.atypicalhus.org.


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012


For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email info@atypicalhus.org

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