The Foundation for Children with Atypical HUS

Bill Biermann
  • Male
  • Barnhart, MO
  • United States
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Bill Biermann's Friends

  • Crystal Ferreira
  • Melanie Mergentime
  • Lisa Goble
  • Melissa Hearn
  • Paula Blanchard Lamigo
  • Cheryl Biermann
  • lisa ann peterson
  • Sheila Burr
  • Desiree L Mayne
  • Donna Kolp
  • Svetlana Finley
  • Phyllis Ann Talbot
  • Heather Still
  • Linda Burke

Bill Biermann's Discussions

FDA Approval for Soliris - Rejoice !!
1 Reply

Started this discussion. Last reply by Cheryl Biermann Sep 23, 2011.

Post Soliris and/or Post Transplant by the numbers
11 Replies

Started this discussion. Last reply by Cheryl Biermann Mar 5.

Protocol for Treatment of Atypical HUS
7 Replies

Started this discussion. Last reply by Bill Biermann Oct 29, 2011.

 

Bill Biermann's Page

Latest Activity

Sharon Schardan is attending Bill Biermann's event

St. Louis Fundraiser - 2012 Trivia Night at Carpenters Hall

March 24, 2012 from 6pm to 7pm
Join us for an evening of Fun, but most importanly, to raise funds for our future research efforts.   Remember, 100% of what we do does directly to the Foundation!Where:   St. Louis, MOWhen:   March 24thWe are looking for donations of trips,hotels, sports memorbilia, or anything else of value.See More
Mar 8
0 Comments
Cheryl Biermann replied to Bill Biermann's discussion Post Soliris and/or Post Transplant by the numbers
"Nathan was in heaven, the infusion center was to full so we went to the floor.  He had his "dream up and down bed", and cable tv, what more could he ask for?  We are post transplant 6 months so it is time to come off one of…"
Mar 5
Cheryl Biermann is attending Bill Biermann's event

St. Louis Fundraiser - 2012 Trivia Night at Carpenters Hall

March 24, 2012 from 6pm to 7pm
Join us for an evening of Fun, but most importanly, to raise funds for our future research efforts.   Remember, 100% of what we do does directly to the Foundation!Where:   St. Louis, MOWhen:   March 24thWe are looking for donations of trips,hotels, sports memorbilia, or anything else of value.See More
Feb 22
0 Comments
debbie thelwell replied to Bill Biermann's discussion Is there such a thing as "Atypical HUS Free" or "Remission periods"
" "
Feb 16
Cheryl Biermann replied to Bill Biermann's discussion Post Soliris and/or Post Transplant by the numbers
"Haven't posted in a while, but for anyone following along to see what happened after his increase from 600-900mls, to platelets especially, here are todays numbers. The platelets had gone back up to the 220s, (his norm), but have…"
Jan 31
Cheryl Biermann replied to Bill Biermann's discussion Is there such a thing as "Atypical HUS Free" or "Remission periods"
"that is a really good idea, Carrie.  Our biomarkers aren't very sensitive at this point though but it has been a good long time since you've had a major issue, do you have a list of the tests theyi are doing?  They think…"
Jan 31
debbie thelwell replied to Bill Biermann's discussion Is there such a thing as "Atypical HUS Free" or "Remission periods"
"Hi guys Josh was sick at school on Thursday so Friday morning I spoke to the hospital as I was conserned there might be low level activity going on as he hasnt been 100% for a few weeks He spent the day on the ward whilst we waited for his blood…"
Jan 31
Bill Biermann posted an event

St. Louis Fundraiser - 2012 Trivia Night at Carpenters Hall

March 24, 2012 from 6pm to 7pm
Join us for an evening of Fun, but most importanly, to raise funds for our future research efforts.   Remember, 100% of what we do does directly to the Foundation!Where:   St. Louis, MOWhen:   March 24thWe are looking for donations of trips,hotels, sports memorbilia, or anything else of value.See More
Jan 31
0 Comments
Cheryl Biermann replied to Bill Biermann's discussion Is there such a thing as "Atypical HUS Free" or "Remission periods"
"How old is he again?  With all the kids when they start very young, like Nathan, they seem to take it in stride, but there are things you can do to help him over the trauma at home.  Take pictures when you are there, talk about what…"
Jan 18
debbie thelwell replied to Bill Biermann's discussion Is there such a thing as "Atypical HUS Free" or "Remission periods"
"Thanks he seems ok to date but will defiantly take on board your comments were still trying to get to grips with living with AHUS he gets really upset going into hospital so avoid if possible. Thanks as always this website is a great support and…"
Jan 17
Cheryl Biermann replied to Bill Biermann's discussion Is there such a thing as "Atypical HUS Free" or "Remission periods"
"I am not a medical expert, but because he has the main symptoms of flaring up, lethargy, pale, and protien leaking I would definitely say this is a mild relapse.  My daughter has MCP but is asymptomatic to date, (if you recall my son,…"
Jan 17
debbie thelwell replied to Bill Biermann's discussion Is there such a thing as "Atypical HUS Free" or "Remission periods"
"I'm really interested in this theory as my son has been mildly Ill before and after Xmas with slight protein leak, pale, lack of energy and low fluid intake and out put, after two days of rest he seemed ok. With mcp mutation i thought we were…"
Jan 15
Bill Biermann replied to Bill Biermann's discussion Post Soliris and/or Post Transplant by the numbers
"I just wanted to point out that not everyone's numbers will be super fantastic right away.  As you can see, Nathan has some glithces, and it took a while (6 weeks) for his numbers to get back into an acceptable range.   So be…"
Oct 29, 2011
Bill Biermann replied to Bill Biermann's discussion Protocol for Treatment of Atypical HUS
"Len   Living donors are preferred, because you can plan the administration of the drug using a preferred protocol.  However, that does not rule out a cadaver kidney, it only makes the  protocol a bit compromised, but not to a…"
Oct 29, 2011
Cheryl Biermann replied to Bill Biermann's discussion Post Soliris and/or Post Transplant by the numbers
" Result Name                              Results                       Reference Range  …"
Oct 25, 2011
Len Woodward replied to Bill Biermann's discussion Protocol for Treatment of Atypical HUS
"Thanks for your experience Dana , that suggests that by week 4 the dossage is about  the same.  "
Oct 24, 2011

Profile Information

Birthday
February 18
Do you have a friend or family member diagnosed with aHUS?
Yes
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
No
My membership request involves business interests as I seek additional aHUS information for business applications.
na
My child ( or myself as a patient) is best described as:
Anti-FH-Ab (CFHR1/CFHR3)

Bill Biermann's Blog

FDA Approval for Soliris (Eculizumab) REJOICE !

 

A  heartfelt thanks and gratitude for all of the hard work and dedication exhibited by the staff of Alexion.  Their vision made the dream of a significantly better treatment for Atypical HUS  a reality.  Endless hours of research,were involved, folllowed with the effort of  accelerating the FDA approval for Soliris, (Eculizumab), and most importantly, and their dedication to rare diseases.

A big Thank you is also in order to the…

Continue

Posted on September 23, 2011 at 4:47pm — 9 Comments

Cheryl and Nathan's big day

Sorry for the short remarks but cheryl will be out of recovery any minute, and Nathan within an an hour.

 

But the bottom line.......(and all of your with this disease will understand)...........NATHAN HAS produced Pee Pee. 

 

Wow, so simply but elegant words, right?     So thats the bottom line in all of this, right?   

 

I will issue something more "Director like"  shortly, but for now, time to savor this as a…

Continue

Posted on August 31, 2011 at 4:00pm — 13 Comments

University of Iowa paper - Pre-emptive use of Eculizimab

Please see the latest publication from the University of Iowa.

 

 

pre%20emptive%20Solirisi.pdf

Posted on June 24, 2011 at 3:00pm

2011 Parent Conference - Save the Date

SAVE THE DATE:

 

The University of Iowa has graciously volunteered to host the 3rd "Atypical HUS Parent Conference" .   This is a great way to meet the top medical Professionals while socializing with parents at the same time. Here are the specifics:

 

Friday, Oct 7th     Early Arrival  7:00pm  Meet and Greet

                           Dinner sponsored by the Foundation

 

Saturday, Oct 8th  The Confererence at the University…

Continue

Posted on June 14, 2011 at 10:46am — 2 Comments

Eculizimab and Neurology - Amazing !!

CPAA-17904-eculizumab-safely-reverses-neurologic-impairment-and-elimina_052311.pdf

Posted on June 2, 2011 at 6:28pm — 3 Comments

Comment Wall (10 comments)

You need to be a member of The Foundation for Children with Atypical HUS to add comments!

Join The Foundation for Children with Atypical HUS

At 8:37am on August 31, 2011, Linda Burke said…

Prayer for Nathan and Cheryl,

Loving Father, we entrust our friends Nathan and Cheryl to your care; guide with wisdom and skill the minds and hands of the medical people who minister in your Name, and grant that all effects of illness be removed, that Nathan may be restored to soundness of health and relearn to live in more perfect harmony with You and with his beloved family and friends. Amen


At 10:46pm on February 6, 2011, Patricia roder said…
Thank you.
At 11:17pm on March 14, 2010, Kamal D Shah said…
Hello Mr. Biermann,

I am a 34 year old from India with atypical HUS since July 1997. I have been a member of this site for over a month now. Can I please have access to the powerpoint slides of the aHUS conference?

Thanks
Kamal
At 4:05pm on February 9, 2010, Kortnee Fornetti said…
Thanks Bill! What a great idea and so easy too! We will do that! Thanks for the support!
At 3:43pm on October 19, 2009, Sheila Burr said…
Bill,
Thank you so much for all you and everyone did to make the conference possible! It is so enlightening to meet others and share our trials, joys and hardships we've all had in dealing with these same problems. The conference was great Rich is sorry to have had to miss it, but rest assured I have filled him in on every detail. I forgot to sign up for the notes from the conference, if there is some way I could get those that would be great. Keep up the awesome job and fight!
At 8:06pm on October 18, 2009, Linda Burke said…
Fabulous Conference, Bill !! Thanks for all of your hard work in arranging the conference - it was very informative and all the docs and lab staff were so nice in addition to being so knowlegeable. You could tell their hearts were truly touched by aHUS families... I'm looking forward to having you obtain their conference presentation slides (hopefully)to put on both the Foundation's informational as well as this interactive site. You and Cheryl are the Best! Many thanks for everyone's outstanding efforts, Linda
At 4:45pm on October 14, 2009, Colette Ann Frysz said…
Bill,

I'll not be attending the conference this time. my air fare budget has taken a big hit this year. However I'll be thinking of you all All my best goes out to everyone.
At 11:39am on June 26, 2009, Linda Burke said…
Hi Bill,
It's great that Nate is doing well- looking forward to seeing some photos, maybe Nate at Kamp Kidney? On Monday Skyler will be going to our town's Kindergarten Kamp for 4 days to meet some new friends who will be in his K class this Fall. We're so happy that he has plenty of energy and good lab values - Skyler can't wait to go and meet new friends! Best, Linda
At 8:27am on June 10, 2009, Heather Still said…
Bill and his wife, Cheryl, have done amazing things for aHUS. They have dedicated themselves to the Foundation for many years and have made amazing progress in their efforts. When my son, Ryan, was first diagnosed in 2002 I found Bill's website for the foundation and decided immediately to join forces with him to fight this horrible illness. I wouldn't have had the time, ambition, or knowledge to create such a successful foundation so I am thankful to the Biermann's everyday for all that they have done!!!
At 8:44pm on June 9, 2009, Linda Burke said…
As Director of the Foundation for Children with atypical HUS, Bill and his wife Cheryl have been "putting kids first" with their efforts to provide information and support to families struggling with aHUS. Their many years coordinating information, services, and funding for children diagnosed with aHUS have inspired and motivated us. We applaud their selfless commitment to help others understand this rare disease, and hope that this new interactive website acts as an outreach for the Foundation for Children with atypical HUS. We welcome Bill Biermann and his family to the website, and look forward to hearing Nathan's story.
 
 
 

WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!

The Foundation for Children with Atypical HUS 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 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.

  

  
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.



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