The Atypical HUS Foundation

Jeff Schmidt
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  • Royersford, PA
  • United States
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  • LUCRECIA HEIDENREICH
  • Carly Schmidt
  • Margriet Eygenraam
 

Jeff Schmidt's Page

Latest Activity

Jeff Schmidt posted a blog post

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”.     Through the global aHUS Alliance (the umbrella organization of Atypical Hemolytic Uremic Syndrome Patient Organizations from…See More
Dec 26, 2016
Jeff Schmidt and LUCRECIA HEIDENREICH are now friends
Aug 6, 2016
Jeff Schmidt posted a blog post

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 world) has chosen a red balloon as the international symbol of ‘rising above aHUS’.  The Alliance would…See More
Aug 3, 2016
Jeff Schmidt posted a blog post

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 several other countries), there is no access to the one…See More
Jun 21, 2016
Len Woodward commented on Jeff Schmidt's blog post Shocking!!! Just 6 Months of Soliris for Our Friends in Ontario, Canada on Dialysis!!! Use Your Facebook Skills to Help!
"Protocols are different in different countries . Not all aHUS transplant patients need eculizumab and not all need it continuously . Using the best advice they could at least get started. Are they doing so. The others should be the long term focus…"
May 31, 2016
Jeff Schmidt commented on Jeff Schmidt's blog post Shocking!!! Just 6 Months of Soliris for Our Friends in Ontario, Canada on Dialysis!!! Use Your Facebook Skills to Help!
"Well said Cheryl.  Thank you for your help once again.  I will soon be making a big push for our Australian friends who's dialysis patients don't even get 6 months.  They get nothing!"
May 26, 2016
Cheryl Biermann commented on Jeff Schmidt's blog post Shocking!!! Just 6 Months of Soliris for Our Friends in Ontario, Canada on Dialysis!!! Use Your Facebook Skills to Help!
"We all should try and help.  Six months!  Most patients would be severely compromised if their treatment is removed.  All Nathan had to do was grow and everything went haywire until the dose was increased.  Can you imagine going…"
May 25, 2016
Jeff Schmidt posted a blog post

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 Soliris and we all know that once Soliris is stopped, the…See More
May 25, 2016
Jeff Schmidt posted a blog post

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 who were already sick, on dialysis, and in need of a kidney transplant had been denied…See More
May 2, 2016
Jeff Schmidt posted a blog post

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 of answers to, so feel free…See More
Jan 27, 2016
Jeff Schmidt posted a blog post

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 asking you to create a short video (10 - 15 seconds) where you say who you are, where you’re from, and why you are rare.  For example. I might say:“Hi,…See More
Jan 12, 2016
Len Woodward commented on Jeff Schmidt's blog post “The fight doesn’t stop until everyone is safe!”
"Indeed it was right of the health authorities there to reconsider the way in which treatment was withdrawn, to find a way in which it can be done in a safe and sustainable way in which all who need treatment get it for as long as they need it; and…"
Jan 6, 2016
Jeff Schmidt posted a blog post

“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 their Soliris treatments for another 12 months (24 total months including this past year) and their Health…See More
Jan 4, 2016
Jeff Schmidt posted a blog post

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 for people to be coming off the…See More
Nov 18, 2015
Jeff Schmidt posted a blog post

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 get sent to Sussan Ley.…See More
Nov 2, 2015
Len Woodward commented on Jeff Schmidt's blog post The Australian Government is Going to Stop Soliris Access After 12 Months to "See What Happens." Let's Tell Them No!
"I disagree with the way in which eculizumab is being withdrawn in Australia  not that it cannot be withdrawn. Unless Alexion reduce the price of eculizumab by 60 to 70% and in doing so meet most cost effective thresholds  then not all aHUS…"
Oct 29, 2015

Profile Information

Birthday
December 7
Do you have a friend or family member diagnosed with aHUS?
Yes
I am an adult aHUS patient.
No
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
No
I have attended a meeting or conference to learn about aHUS.
NORD aHUS Regional Meeting, 2014 aHUS Family Conference in Iowa
My membership request involves business interests as I seek additional aHUS information for business applications.
no
My child ( or myself as a patient) is best described as:
Factor H (CFH) /Protein (Gene)

Jeff Schmidt's Blog

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”.   

 …

Continue

Posted on December 26, 2016 at 5:47pm

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…

Continue

Posted on August 3, 2016 at 3:00pm

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…

Continue

Posted on June 21, 2016 at 7:07pm

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…

Continue

Posted on May 25, 2016 at 7:54pm — 3 Comments

Comment Wall (3 comments)

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Join The Atypical HUS Foundation

At 8:24am on October 29, 2014, Phyllis Ann Talbot said…

ha ha ha!  Welcome stranger ;-)

At 6:41am on October 29, 2014, Phyllis Ann Talbot said…

Hey Jeff!  How were you not on here before?!?!?! ;-)

At 10:17pm on October 28, 2014, Linda Burke said…

Welcome, friend - so glad to see you here!

 
 
 

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.

************************

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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