The Atypical HUS Foundation

Jeff Schmidt's Blog (29)

aHUS Alliance Global Video Project for Rare Disease Day, February 28, 2017

Rare Disease Day is right around the corner.  The world will join together on February 28, 2017 to raise awareness for rare diseases.  The theme for the upcoming Rare Disease Day is “Research”.   

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Added by Jeff Schmidt on December 26, 2016 at 5:47pm — No Comments

aHUS Alliance Global Video Project for aHUS Awareness Day, September 24, 2016

(Updated August 9, 2016 - new coloring page added)



The second annual aHUS Awareness Day is coming up fast.  The world will join together on September 24, 2016 to raise awareness for aHUS.  The global theme for aHUS Awareness Day this year is ‘Rise above aHUS’.   

The global aHUS Alliance (the umbrella organization of Atypical Hemolytic Uremic Syndrome Patient Organizations from around the…

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Added by Jeff Schmidt on August 3, 2016 at 3:00pm — No Comments

Meet This Courageous Family Ready to Leave Their Country To Save Their Young Son with aHUS







Here is the story of an amazing and courageous family from India.  Deepika and Anil Jaiswal have a young son Aadhyan who has had aHUS since he was 1 year old.  He is now close to 6.  But what’s different for Aadhyan, is that unlike those in the United States (and…

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Added by Jeff Schmidt on June 21, 2016 at 7:07pm — No Comments

Shocking!!! Just 6 Months of Soliris for Our Friends in Ontario, Canada on Dialysis!!! Use Your Facebook Skills to Help!

Recently, Health Minister Dr. Eric Hoskins of Ontario, Canada announced that Soliris would finally be made available to those on dialysis and in need of a kidney transplant.  This would be good news except that these patients will get a maximum of 6 months of…

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Added by Jeff Schmidt on May 25, 2016 at 7:54pm — 3 Comments

Only 6 Months of Soliris for Dialysis Patients in Ontario, Canada. Let's Do Something About It!

In February, 2015, the Ontario government announced that it would provide interim funding for Soliris for aHUS patients who meet “defined clinical criteria”.  This was great news for those who were new patients with aHUS.  But those…

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Added by Jeff Schmidt on May 2, 2016 at 7:00pm — 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

Tell the Pharmaceutical Benefits Advisory Committee (PBAC) to Recommend Soliris for Australians with aHUS

Our friends from AHUS Patient Support Group Australia (aPSGA) met with Alex Best from the office of Health Minister Sussan Ley to discuss the policy that will force those who started Soliris back on December 1st, 2014, to stop at the end of November to "see what happens".  The meeting seemed to go well and they asked him to postpone taking people off drug at this time of year since there is less staff available over Christmas and it is not an ideal time…

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Added by Jeff Schmidt on November 18, 2015 at 7:08pm — No Comments

Please Help Our Friends in Australia Who Desperately Need Soliris

Our friends in Australia who started Soliris treatments last December 1st are about to lose access to those treatments at the end of November.  Please send their Health Minister Sussan Ley an email like the one below to show your support and to put pressure on.  Feel free to copy the exact email but replace my story (in red) with your personal story.  Your personal story just may be the one that makes a difference!



And please sign the petition that will…

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Added by Jeff Schmidt on November 2, 2015 at 8:00pm — No Comments

The Australian Government is Going to Stop Soliris Access After 12 Months to "See What Happens." Let's Tell Them No!

December 1, 2014 marked a very important day in Australia.  That was the day their government finally started providing access to the life-saving drug Soliris (eculizumab) for some patients with aHUS in Australia.  This has saved lives.  But according to policy, those who started Soliris last December will be forced to stop their treatments at the end of November (after 12 months) unless their aHUS is active.  That will likely be everyone as Soliris effectively…

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Added by Jeff Schmidt on October 18, 2015 at 1:00pm — 1 Comment

aHUS Awareness Day, September 24, 2015 Outreach Project

Americans, by now you realize the first ever aHUS Awareness Day on September 24, 2015 is fast approaching.  We have another project for this special day (or any day you’re available) that we’d like to see everyone get involved in.

 

For this project, Alyssa Deffenbaugh and I would like everyone to take the aHUS fact sheet provided by the aHUS Alliance and find at least one person that…

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Added by Jeff Schmidt on September 18, 2015 at 1:30pm — 3 Comments

aHUS Awareness Day, September 24, 2015 Kids Project

Hey Americans!  We have another project for the first ever aHUS Awareness Day on September 24, 2015.  Alyssa Deffenbaugh and I have been working together through the Atypical HUS Foundation on ideas for this special day.

For this project, Alyssa came up with the brilliant idea of getting the kids involved.  She would like them to draw a picture that shows what it means to be healthy or maybe how they feel about having…

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Added by Jeff Schmidt on September 2, 2015 at 3:17pm — 1 Comment

aHUS Awareness Day, September 24, 2015 Video Project

Calling all Americans!  The first ever aHUS Awareness Day is coming up fast.  It is September 24, 2015.  The world is joining together that day to raise awareness for aHUS.  

The global theme for aHUS Awareness Day is ‘Communication’.   There are many common concerns that affect aHUS patients regardless of nation, culture, or language such as:  the need for quick and accurate diagnosis, access to treatment and…

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Added by Jeff Schmidt on August 24, 2015 at 7:30pm — No Comments

Athletes/Atletas/Athlètes Across the Globe Raising Awareness for aHUS and Other Rare Diseases

I’d like to introduce you to some athletes from across the world who are making a difference by raising awareness for aHUS and other rare diseases.  We often think of athletes as selfish and only being interested in making money.  But I’d like to show you some athletes who are showing what incredible role models they are.

Me gustaría presentarles a algunos atletas de todo el mundo que están…

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Added by Jeff Schmidt on August 6, 2015 at 7:02pm — No Comments

Put Your Facebook Skills to Use to Help Our Friends in Sweden Gain Access to Soliris (eculizumab)

The situation in Sweden is bad.  Though those with aHUS who are presently on Solris will remain on it, no new patients will have access to Soliris.  This is unacceptable.  Stefan Persson, the President of Sweden’s aHUS support group AHUS-FFII is fighting hard for all those with aHUS.  We need to help him and all our friends in Sweden.…



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Added by Jeff Schmidt on June 25, 2015 at 2:46pm — No Comments

Sweden Tells its People “No Soliris for New Patients”

We already were aware of the unequal care of those with aHUS in Sweden.  It seemed like where you lived (or your postal code) determined whether Soliris would be available.  This was going to be a hard enough fight.

 

But now I’m told by Stefan Persson, the President of Sweden’s aHUS support group AHUS-FFII, that the Swedish Health Minister has decided that no new patients will receive…

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Added by Jeff Schmidt on June 10, 2015 at 5:37pm — No Comments

Global Spotlight – Stefan Persson from Sweden’s aHUS Support Group

I’d like to introduce you to Stefan Persson.  He lives in Sweden and is the founder and President of the Swedish aHUS support group Ahus-ffii.  This group was started during the summer of 2014.

 

 

In 1993, Stefan had a daughter who got sick with aHUS (though diagnosed with TTP-HUS)…

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Added by Jeff Schmidt on May 19, 2015 at 6:22pm — 3 Comments

Ontario, Canada - Response From the Office of the Health Minister Dr. Eric Hoskins

Those wondering what's going on in Ontario, Canada with their quest to get Soliris, here is the public response from Dr. Hoskins' office to one of my posts to his Facebook page. It's full of a lot of stuff hard to read but he does say that Soliris is available to those who qualify. And he provides a link to what he says describes the conditions to receive Soliris. But if you go to this link you will see that they are talking about Soliris for PNH, not aHUS. Of…

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Added by Jeff Schmidt on April 16, 2015 at 6:30pm — 2 Comments

Global Spotlight – India’s First Ever Dialysis Olympiad!

Check out what our friends in India did back in February.  We all know that dialysis can be very hard on the body and keep you from doing every day activities let alone any kind of exercising.  Well our friend Kamal Shah who runs the Atypical HUS India Foundation is also the co-founder of NephroPlus which is India’s leading dialysis network provider.  And NephroPlus organized the first ever Dialysis Olympiad in India that was held on Feb 15, 2015.  It was a huge…

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Added by Jeff Schmidt on March 29, 2015 at 9:30pm — 7 Comments

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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