The Foundation for Children with Atypical HUS

Members

  • Kerri Grey
  • Kamal D Shah
  • Jessica Olivia Frysz
  • Laura Jean Pallme Hearst
  • Dana M Simone
  • Linda Burke
  • Bill Biermann
  • Zofia
  • NATALIE WALLACE
  • Phyllis Ann Talbot
  • lisa ann peterson
  • Bonnie Warren
  • Caryn Hamilton
  • Pam Vose
  • Cheryl Biermann
  • Joy Lewis

DOC To DOC - Registry

Sharing the Expertise-
our 'Doc to Doc Registry'

Physicians wishing to connect with other doctors experienced with the complexities of aHUS' multiple issues and presentations may contact:


Patrick Brophy, MD
University of Iowa
Pediatric Nephrology, Dialysis & Transplantation
Office: (319) 384-3090
Fax: (319) 384-3050
U of Iowa Heath Care
(319) 356-7249
Iowa City, Iowa
aHUS interests: diagnosis and ongoing care of multiple patients, dialysis issues, and transplantation

Stuart Goldstein, MD
University of Cincinnati College of Medicine
Division of Nephrology and Hypertension &
The Heart Institute
Director, Center for Acute Care Nephrology
Cincinnati Children's Hospital Medical Center
3333 Burnet Avenue
MLC 7022
Cincinnati, Ohio 45229
Phone: 513-636-2209
Fax: 513-636-7407
E-mail: stuart.goldstein@cchmc.org
aHUS interests: long-term (10yrs+)PD dialysis, hemodialysis, growth issues/growth hormone

Matt Hand, DO
Carrie Gordon, MD
Oliver Fremont, MD
Maine Medical Partners Pediatric Specialty Care (Nephrology)
Office: (207) 662-5522
Fax: (207) 662-5526
Portland, Maine
The Barbara Bush Children's Hospital at Maine Medical Center
aHUS interests: multiple aHUS patients, Soliris, dual organ transplant, TRALI incidence with plasmapheresis

Joel Hernandez, MD
Pediatric Nephrology
Sacred Heart Children's Hospital
Spokane, Washington
Office: (509) 474-5445
aHUS interests: multiple aHUS patients, Soliris

Christoph Licht, MD, FASN
Asst. Professor of Paediatrics
Division of Nephrology
The Hospital for Sick Children
Toronto, Canada
Tel: +1 416 813 7654 x 2058
Fax: +1 416 813 6271
email: christoph.licht@sickkids.ca
aHUS interest: research focused on complement-based renal diseases

Julius Sherwinter, MD
Dunwoody Pediatrics (Nephrology) and the Children's Kidney Center
Office: (770) 394-3458
Atlanta, Georgia
Chief Pediatric Nephrology
Associate Clinical Professor
Children's Healthcare of Atlanta
aHUS interests: infants and Soliris


We deeply appreciate the generosity of the physicians above, who have graciously volunteered to share their aHUS expertise and experiences. We extend a warm welcome to all physicians or researchers with aHUS case experiences; doctors wishing to add their contact information to this 'Doc to Doc' registry may notify linda@atypicalhus.org

Regarding Soliris
Physcians may contact the Medical Information Department of Alexion Pharmaceuticals, Inc at 1.888.SOLIRIS (765-4747)

Technical infomation about Soliris is available in our Forum 'How Soliris Works' courtesy of www.rxlist.com

'c5 Functional Assay' information is available through:
*Mayo Clinic
mayomedicallaboratories.com
Test Number: Unit Code 83392
1-800-533-1710
*National Jewish Hospital
1-800-550-6227 or 303-398-1541

Doctors may also contact linda@atypicalhus.org for further details regarding Soliris contact info

Parents, please have your child's doctor utilize the physician contact data above if you feel your child would benefit from a 'doc to doc' consultation.



The Atypical HUS CONFERENCE was held on
Oct. 17th, 2009 at the University of Iowa.Our deepest appreciation for the outstanding efforts of the University of Iowa doctors and lab staff, who enlighted us with information as they created a meaningful and supportive environment for connecting research and aHUS families. We especially appreciate the courtesy extended to aHUS families and their physcians in regard to sharing the information presented at the Oct. 17, 2009 aHUS Conference.

Conference information has been edited and presentation Powerpoints are available to Members of this website and to physicians dealing with aHUS patients .Please contact the director of the Foundation for Children with Atypical HUS, Bill Biermann, via his Member page on this website, to request aHUS Conference Presentations.


Links

Join Us on Twitter
Send a Virtual Pearl Bracelet
atypicalhus.50megs.com
Univ. of Iowa Genetic Testing

iGive.com

Latest Activity

Linda Burke commented on Kerri Grey's blog post 'aHUS and joint issues'
Oh my, Kerri - I'm sorry that this new concern has popped up on your radar. The first thing I thought of when I read your post was, "Thank goodness she has Kerri for a mother!" I feel sure that you will leave no stone unturned in regard to your daug…
3 hours ago
Kerri Grey added a blog post
Hi i was just wondering if anyone knows or has experienced whether or not aHUS can be linked with joint issues. I ask because my daughter had an appointment at our childrens hospital yesterday because she can not rotate her arms so that her palms ca…
4 hours ago
Jessica Olivia Frysz commented on Jessica Olivia Frysz's blog post 'Heading back to college and getting responses for kidney donation'
yes it is very exciting!
yesterday
Cheryl Biermann commented on Linda Burke's blog post 'ADVOCACY MEETING at Alexion Pharmaceuticals to Discuss aHUS and Soliris (Aug. 5, 2010)'
Thank you for putting together this summary, Linda. The hope we all have for the future of our loved ones was definitely increased after speaking with and hearing the commitment of the Alexion team.
yesterday
Cheryl Biermann commented on Kamal D Shah's blog post 'DNA could not extracted from blood samples'
Hi, Kamal, If you follow the patients who are receiving Eculizimab, (Soliris), there are patients who have no known genetic mutation but have had wonderful success in preventing further damage to their kidneys and other organs. Based on this, I thi…
yesterday
Cheryl Biermann commented on Jessica Olivia Frysz's blog post 'Heading back to college and getting responses for kidney donation'
How exciting, Jessica!
yesterday
Kerri Grey commented on Linda Burke's blog post 'ADVOCACY MEETING at Alexion Pharmaceuticals to Discuss aHUS and Soliris (Aug. 5, 2010)'
Thank you so much to Linda and the Biermanns for advocating on behalf of us all!!!
yesterday
Linda Burke commented on Linda Burke's blog post 'ADVOCACY MEETING at Alexion Pharmaceuticals to Discuss aHUS and Soliris (Aug. 5, 2010)'
Alexion certainly is to be much commended for their outreach to patients - hopefully this will be a promising treatment that is a life-changing medicine for many who are battling an ultra-rare disease. The Biermanns have paved the path of education…
yesterday
Colette Ann Frysz commented on MARCIA AGUALLO BAKER's blog post 'Ben has the Factor H gene mutation'
Marcia, Just to let you know, my family and I are all Factor H deficient. Jessica has atypical HUS. However I also had a rare disease which after much prodding I found is also a factor H deficient disease. It is Guillam Barre syndrome. There are cer…
yesterday
Colette Ann Frysz commented on Kamal D Shah's blog post 'New drug patented that targets Factor H mutations'
Kamal, Yes I ran across the drug you mentioned for the Factor H. I believe there is a company in France that is working on the factor h replacement drug. They from what I read are in the beginnings of the prcess. But it is also very promising. I ran…
yesterday
Colette Ann Frysz commented on Linda Burke's blog post 'ADVOCACY MEETING at Alexion Pharmaceuticals to Discuss aHUS and Soliris (Aug. 5, 2010)'
Linda, Kudos to you and the Biermans for being able to bring forth information to the resource of something that could help so many. Kudos to Alexion for even asking.
yesterday
Jessica Olivia Frysz commented on Linda Burke's blog post 'ADVOCACY MEETING at Alexion Pharmaceuticals to Discuss aHUS and Soliris (Aug. 5, 2010)'
Linda that is such an honor you received! I'm glad to hear that you are participating and speaking on behalf of the parents and patients affiliated with the disease and maybe that will get some more ideas into their heads that this drug can do wonde…
on Tuesday

Forum

Linda Burke

Soliris 233 Replies

Started by Linda Burke in Soliris. Last reply by Linda Burke Aug 25.

Joy Lewis

Transplant Considerations: Things to think about when choosing a transplant center 10 Replies

Started by Joy Lewis in Uncategorized. Last reply by Cheryl Biermann Aug 25.

Joy Lewis

Current research 36 Replies

Started by Joy Lewis in Uncategorized. Last reply by Kamal D Shah Aug 24.

KaTrina Slaughter

Treatment 22 Replies

Started by KaTrina Slaughter in Soliris. Last reply by Cheryl Biermann Aug 13.

Christy

Prayers 59 Replies

Started by Christy in Uncategorized. Last reply by Cheryl Biermann Aug 11.

 

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Blog Posts

Kerri Grey

aHUS and joint issues

Hi i was just wondering if anyone knows or has experienced whether or not aHUS can be linked with joint issues. I ask because my daughter had an appointment at our childrens hospital yesterday because she can not rotate her arms so that her palms can face upwards. They did xrays and it showed that she has no joint in her elbow and her 2 forearm bones are fused together. We have now been refered to a different specialist and a genetisist because they said that the type of thing she has is commonl… Continue

Posted by Kerri Grey on September 2, 2010 at 10:18pm — 1 Comment

Linda Burke

ADVOCACY MEETING at Alexion Pharmaceuticals to Discuss aHUS and Soliris (Aug. 5, 2010)

Alexion Pharmaceuticals, makers of Soliris (eculizumab), asked the Biermanns and I to participate in an advocacy meeting on August 5th, 2010 to discuss issues regarding aHUS patients and families. We very much appreciated their kind invitation to visit Alexion Pharmaceuticals in Conneticut to speak with senior staff. In repres

… Continue

Posted by Linda Burke on August 31, 2010 at 3:00pm — 5 Comments

Kamal D Shah

DNA could not extracted from blood samples

I had sent my blood samples to the Mario Negri Institute in Bergamo, Italy for genetic testing. They could do only the ADAMTS13 gene and for the rest of the tests, they got back saying that the DNA could not be extracted!


I have no idea why. I am really disappointed because I sent the samples in March this year and have been waiting anxiously for the results. The results would have helped me decide about a second transplant (first transplant Nov 1998 - HUS recurrence). A lot
… Continue

Posted by Kamal D Shah on August 31, 2010 at 4:25am — 3 Comments

Jessica Olivia Frysz

Heading back to college and getting responses for kidney donation

Hi everyone!



I know I'm not on here much, but here's yet another awaited update. I'm enjoying my last full week of freedom before I head back to classes next week on Sept 7th, where I will be taking my place as an upperclassman as a Medaille College senior classman. This is going to be a hectic year, with all the responses I've been getting from people who want to get tested for me to donate a kidney to me. I've been getting emails and phone calls from people from other states.

… Continue

Posted by Jessica Olivia Frysz on August 30, 2010 at 12:48pm — 2 Comments

Zofia

update on Ania

Ania is doing well. She just turned 8 on Aug. 26th. She gets FFP
every twelve days, but we will try to extended times between getting FFP to 14 days and even more. She is on ramiprilum, losartanum kalicum, amlodip… Continue

Posted by Zofia on August 30, 2010 at 4:43am — 2 Comments

NATALIE WALLACE

Waiting for test Results!

Ben is doing well. He just turned 5 on Aug. 24th. In the hospital CHOP a few times this summer. Treatment FFP and Steroids did the trick. He was home each stay within two days. Much better than before. Still gets FFP every ten days. On lisinapril for BP. That seems to work for him. Waiting for lab results from Iowa from Dr. Brophy. Thanks to this web site… Continue

Posted by NATALIE WALLACE on August 28, 2010 at 9:01am — 3 Comments

Videos

Events

September 25

Saturday

 
 
 
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 "About aHUS" tab 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 2010 genetic testing and treatment.

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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