The Atypical HUS Foundation

All Blog Posts (979)

aHUS Global Survey for Patents & Caregivers - Launched Rare Disease Day 2016

     The aHUS Alliance, an umbrella group of 15 nations with aHUS patient groups, launched a worldwide survey of aHUS patients and caregivers to mark Rare Disease Day 2016 (29 February).  A similar effort was conducted in partnership with RareConnect in 2014, with 214 respondents from 17 nations and responding to outreach in 6 different languages.  The 2014 poll included questions on common themes familiar…

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Added by Linda Burke on March 8, 2016 at 9:00am — No Comments

Doc to Doc Directory – aHUS Medical Expertise goes Global

     The Atypical HUS Foundation is most pleased to announce the expansion of the Doc to Doc Directory, adding three new volunteer physicians, all highly experienced in multiple and specialized aspects of atypical HUS, to our listing providing free consultation via email or phone to fellow doctors worldwide.  Our deepest thanks to all volunteers on the Doc to Doc Directory physician…

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Added by Linda Burke on February 8, 2016 at 12:30pm — No Comments

Founder of aHUS India Recognized for Advocacy

     Kamal D. Shah, founder of Atypical HUS India, was honored this week as presenter of a keynote speech for the La Renon TANKER Foundation and his selection for their Sake of Honour Award.  Kamal was diagnosed with atypical HUS in July 1997 at age 22, and received a donated kidney from his mother a year later.  Little was known then about aHUS recurrence, and Kamal’s renal transplant failed within 11 days, requiring him to go back on peritoneal dialysis.  In circumstances to rival any…

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Added by Linda Burke on January 28, 2016 at 11:30am — No Comments

Send Your Submission to the PBAC in Australia to Help Our aHUS Friends on Dialysis

Here’s a new way you can help our friends from Australia.  In March 2016 there will be a meeting by the PBAC to determine if Soliris should be provided to aHUS patients who are on dialysis.  You can send a personal submission to the PBAC to show your support of our Australian friends.  We only have until Feb 10, 2016 to send them so please hurry and ask your family and friends to help.  I listed my answers to some of the questions that you may have trouble thinking…

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Added by Jeff Schmidt on January 27, 2016 at 2:12pm — No Comments

Rare Disease Day - February 29, 2016 - Video Project

Rare Disease Day is coming soon.  This year is extra rare as the last day of February is the 29th.   

For those who would like to participate in this year’s video project I’m…

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Added by Jeff Schmidt on January 12, 2016 at 8:00pm — No Comments

“The fight doesn’t stop until everyone is safe!”

“The fight doesn’t stop until everyone is safe!”  That’s what my friend from Australia, Sarah Mulligan said over a year ago when we were trying to convince the Australian health minister to fund Soliris for aHUS patients.  That held true back then and it holds true now.

 

A big battle was won in Australia on December 17, 2015 when the PBAC recommended aHUS patients be allowed to continue…

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Added by Jeff Schmidt on January 4, 2016 at 7:08pm — 1 Comment

Hemotology Convention Review

Hello Everyone, I decided to caption this blog with Hemotology Convention for those (like me) who didn't know what "ASH" stands for.

ASH- Is the American Society of Hemotology. Their International convention was in Orlando and for the first time Our Foundation had a booth! I was honored to be asked to represent our foundation along with Megan Russo. I feel we were a great team as I am the caregiver, and she is the patient. It was awsome to see all the doctors light up when we would say… Continue

Added by Barbara Farcher on December 28, 2015 at 2:54pm — 2 Comments

The aHUS Advocate – The Year in Review, 2015

     Ushering out the old and ringing in the new!  The New Year holds promise to be an exciting year, filled with innovation and opportunities within the aHUS community in America and beyond!   Not that 2015 was dreary, as a matter of fact it proved quite the opposite.

     In 2015 there were 20 aHUS regional meetings schedules across the USA, hosted by NORD and Global…

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Added by Linda Burke on December 28, 2015 at 12:00am — No Comments

Drug Development Overview: aHUS Community Looks for Advancements in 2016

     As 2015 draws to a close, it seems likely that 2016 will bring progress in complement therapeutics development toward clinical use.  Since a hallmark of aHUS is chronic, uncontrolled complement activation, we’re looking forward to what happens in a rapidly moving field which seems promise advancement soon.  (FMI Click Here) As with eculizumab (Soliris ®, from Alexion Pharmaceuticals), we likely will see clinical trials…

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Added by Linda Burke on December 27, 2015 at 9:00pm — No Comments

aHUStonishing Hero's Project

As we approach this holiday season, Jana Dodd, reminds us to "Count Your Many Blessings".

In our aHUS community, we often appreciate more of the small things, the mini milestones, and the everyday accomplishments. This is such a gift that we have be given. Everyday is a blessing.

With that said, our first aHUStonishing hero is the sweet Eliza.…

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Added by Donna Kolp on December 20, 2015 at 2:54pm — No Comments

Challenges Across the Board

Hey everybody, It's been a long time since I've provided an update on how things are for me so I wanted to take some time to do that. This last quarter of the year, has undoubtedly been the hardest for me since being diagnosed. I've held on to faith and hope that treatment would keep me going but my circumstances have been less than ideal. 

I just ended my (hopefully) last fall semester of college, and it definitely gave me a run for my money. In October I was asked to be a…

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Added by Megan Russo on December 17, 2015 at 5:50pm — No Comments

ASH Take Aways

Earlier this December I was honored to attend the ASH (American Society of Hematology) conference. I was blown away by the amount of people who attended and humbled to speak with doctors to gain information on the newest technologies for aHUS. The first day there we had a lot of doctors from other countries approach our booth who did not have access to treatment. The remainder of the event we had many doctors and researchers approach us that did not know the foundation existed. Overall, ASH…

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Added by Megan Russo on December 17, 2015 at 4:03pm — No Comments

Speaking on behalf of the Foundation at the Phoenix meet up in December 2015

Just recently I was asked to tell my story and speak on behalf of the atypical HUS Foundation at the Phoenix meet up. 

My husband and I are from the Dallas Texas area, so we flew out to Phoenix first thing Friday, December 4. We got checked into our hotel and attended the dinner provided by Global Genes. During the dinner, we had an "ice breaking" type activity. The goal was to introduce yourself to the group, tell where you are from, and tell an embarrassing story about…

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Added by Amber S Schlaht on December 16, 2015 at 11:56am — No Comments

Achillion Pharmaceuticals presents data at ASH: Small-Molecule factor D Inhbitors

     Achillion Pharmaceuticals, Inc. distributed a press release on the first day of the American Society of Hematology meeting which was held December 5-8, 2015 in Orlando Florida.  In their December 5th  2015 press release, they announced that their company would present information regarding Achillion’s small-molecule factor D inhbitors at the 57th Annual Meeting of the ASH.…

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Added by Linda Burke on December 8, 2015 at 9:00am — 1 Comment

Akari Therapeutics to present data on Coversin at ASH

     In a Dec 5, 2015 press release, Akari Therapeutics announced that they will present new data about the efficiacy of Coversin  in eculizumab resistant patients at the 57th American Society of Hematology (ASH) Annual Meeting taking place in Orlando from December 5-8.

     Coversin  inhibits complement C5 activity, and is described…

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Added by Linda Burke on December 5, 2015 at 11:30pm — 1 Comment

Alnylam Pharmaceuticals to present data on ALN-CC5 at ASH

     Alnylam Pharmaceuticals has announced that Alnylam scientists and collaborators will present at ASH the new results from ongoing clinical studies, to include a poster session of particular interest to the aHUS community.  One of its two of its subcutaneously administered investigational drugs, ALN-CC5, currently being explored within the context of paroxysmal…

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Added by Linda Burke on December 4, 2015 at 3:30pm — No Comments

Ra Pharma launches Phase 1 study of RA101495

December 2, 2015

     Ra Pharmaceuticals announced today the launch of a Phase 1 study of its C5 complement inhibitor RA101495.  From the…

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Added by Linda Burke on December 2, 2015 at 11:30pm — 1 Comment

Cyber Shopping Benefits aHUS Research

iGive.comiGive.com     Taking advantage of Cyber Monday deals or doing holiday shopping online?  Sending flowers for the holidays?  Booking holiday, work, or vacation travel?  The Atypical HUS Foundation supports multiple aHUS education and outreach efforts across America and beyond,as well as issuing an annual call to aHUS researchers seeking grants for projects of direct benefit to aHUS…

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Added by Linda Burke on November 29, 2015 at 1:00pm — No Comments

KDIGO Conference in Barcelona - What's the News?

     As patients and caregivers we often wonder what constitutes the best standards of care and monitoring for aHUS patients.  With most diseases or disorders, physicians often rely on ‘best practice’ protocols developed by medical experts, adding further meaning to such standards with education provided by their training,  experience gained in practice, and information supplemented by ongoing/updated professional development (e.g. medical conferences).  When a…

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Added by Linda Burke on November 23, 2015 at 10:30pm — 2 Comments

Global aHUS Experts Meet in Barcelona at KDIGO Conference on Kidney Disease

     Tonight began the KDIGO Controverseries Conference on Complement-Mediated Kidney Disease, held November 19-21 2015 in Barcelona Spain.   The opening reception was a Who’s Who in the global world of aHUS researchers and clinicians, so I was both humbled and honored to speak with these world class aHUS experts from nations all over the world to include Italy, France, the UK, Germany, Sweden, the Netherlands, Turkey, India, China, and the UK. View the full…

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Added by Linda Burke on November 19, 2015 at 5:00pm — 5 Comments

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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.
  
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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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