The Atypical HUS Foundation

Jodi Kayler's Discussions (45)

Discussions Replied To (44) Replies Latest Activity

"Hi Janet, I hope she is doing better. I just wanted to make a note that It is common…"

Jodi Kayler replied Aug 29, 2011 to Getting help from US experts to out of country (Japan) hospitals

6 Aug 29, 2011
Reply by Janet Punty

"Hi, We are on the West Coast (Washington). UCLA is one of the leading children's hos…"

Jodi Kayler replied Aug 9, 2010 to Treatment

27 Nov 1, 2010
Reply by Cheryl Biermann

"Soliris was approved with new insurance without a hitch. Took only 24-hours this tim…"

Jodi Kayler replied Jul 15, 2010 to Soliris

293 Sep 18, 2013
Reply by Barbara Farcher

"So our corporate insurance policy has changed hands again. We have to get Soliris ap…"

Jodi Kayler replied Jul 13, 2010 to Soliris

293 Sep 18, 2013
Reply by Barbara Farcher

"I just want to say my heartaches thinking about how stressful both your (Stacey &…"

Jodi Kayler replied Jun 12, 2010 to Dual Transplant - Kidney/Liver

23 Jun 13, 2010
Reply by Stacey

"Hi Stacey, I haven't followed your story very close but I just noticed your post and…"

Jodi Kayler replied Jun 12, 2010 to Dual Transplant - Kidney/Liver

23 Jun 13, 2010
Reply by Stacey

"Just a quick update on Coen: Coen, now 7, has been on Soliris for 14 months and life…"

Jodi Kayler replied Jun 9, 2010 to Soliris

293 Sep 18, 2013
Reply by Barbara Farcher

"Skyler's new protocol is interesting for all of us. We have reduced Coen to once a m…"

Jodi Kayler replied May 19, 2010 to Soliris

293 Sep 18, 2013
Reply by Barbara Farcher

"Yay! For little Chloe! I'm so happy that Soliris was approved and is working wonders…"

Jodi Kayler replied Apr 11, 2010 to Soliris

293 Sep 18, 2013
Reply by Barbara Farcher

"Great news Kerri. I think this disease has forced us all to learn patience like I ne…"

Jodi Kayler replied Mar 23, 2010 to Soliris

293 Sep 18, 2013
Reply by Barbara Farcher

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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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