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Patrick Brophy
- Male
- Iowa City, IA
- United States
- Blog Posts (2)
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Patrick Brophy's Page
Latest Activity
Patrick Brophy left a comment for Jill Ziegler"Hi Jill
Thanks for inviting me to be your friend! Let me know if I can help out with any questions you may have. Pat Brophy"
Cheryl Biermann commented on Patrick Brophy's blog post Univ of Iowa Translational Research"Merry Christmas to all of you working in Iowa, our aHUS's families' "field of dreams"!"
Deborah Deffenbaugh commented on Patrick Brophy's blog post Univ of Iowa Pediatric Transplant"Thanks for getting back to me so quickly. We have discussed this with Alyssa's doctors and the decision was made to wait and see how things go for now. She is on blood thinners and we would rather not risk a bleeding issue unless the procedure…"
Patrick Brophy commented on Patrick Brophy's blog post Univ of Iowa Pediatric Transplant"Hello Deborah
Our protocol does not have any stipulation for surveillance biopsy in our eculizumab induced transplant patients. We use standard clinical/laboratory transplant and aHUS indices to make our decision whether or not to biopsy.
It would…"
Deborah Deffenbaugh commented on Patrick Brophy's blog post Univ of Iowa Pediatric Transplant"Hi Dr. Brophy. Alyssa's doctors are advising us to have a kidney biopsy done and that it is the Iowa protocal to do a biopsy. Alyssa is not showing any signs of rejection and we are just wondering why it is necessary and wondered if you could…"
Paula Blanchard Lamigo commented on Patrick Brophy's blog post Univ of Iowa Translational Research"Congratulations Tara! What an accomplishment! Your continued research in aHUS, has helped numerous families and has had a far-reaching positive impact on many people. It's a wonderful feeling to know that someone like you is helping to unravel…"
Cheryl Biermann commented on Patrick Brophy's blog post Univ of Iowa Translational Research"Congratulations, Tara!"
Joy Lewis O'Brien commented on Patrick Brophy's blog post Univ of Iowa Translational Research"Congratulations, Tara, and thank you for all your work!"
Linda Burke commented on Patrick Brophy's blog post Univ of Iowa Translational Research"Congratulations to Tara Maga, a Member of this website and a PhD student at the University of Iowa studying the genetics of aHUS, specifically other genes may contribute to the development of aHUS.
The Foundation for Children with Atypical HUS is…"
Patrick Brophy posted a blog postUniv of Iowa Translational Research
Good MorningWe wanted to let the group know that Tara from Dr. Richard Smith's lab here at the U of Iowa was recently awarded one of the very competative training grants in Genetics to further carry out basic reseach in aHUS in Dr. Smith's lab! We are very excited for her and our overall program. This really exposes the cutting edge genetics she is doing and a great achievement for her. It meshes so well with Dr. Nester's translational scientific and clinical efforts at our center as well!Thank…See More
Patrick Brophy commented on Patrick Brophy's blog post Univ of Iowa Pediatric Transplant"Thanks Linda
Indeed this appears to be the first one in the US (maybe the Western Hemisphere). Thank you for your kind comments. We are very excited about this and hope to continue to define treatment options for aHUS and other Rare Renal Diseases…"
Linda Burke commented on Patrick Brophy's blog post Univ of Iowa Pediatric Transplant"Thanks for posting, Dr. Brophy! The Foundation for Children with Atypical HUS is proud to be partnered with the University of Iowa for aHUS research and genetic testing. I'm sure members of this website join me in sending congratulations to the…"
Patrick Brophy commented on Patrick Brophy's blog post Univ of Iowa Pediatric Transplant"Hello
The question posed by the Biermann's is an important one that must take into account a number of factors. The decision to do either is based on the patient's status: dialysis dependent versus not, size and age of the patient, type of…"
Cheryl Biermann commented on Patrick Brophy's blog post Univ of Iowa Pediatric Transplant"Dr. Brophy,
I cannot express to you our thankfulness to you for the developement of protocols for our population when considering a transplant with Eculizumab and for your great care of Brandi. It is an exciting time for us; I don't think…"
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- Birthday
- August 21
- Do you have a friend or family member diagnosed with aHUS?
- Yes
Patrick Brophy's Blog
Univ of Iowa Translational Research
Good Morning
We wanted to let the group know that Tara from Dr. Richard Smith's lab here at the U of Iowa was recently awarded one of the very competative training grants in Genetics to further carry out basic reseach in aHUS in Dr. Smith's lab! We are very excited for her and our overall program. This really exposes the cutting edge genetics she is doing and a great achievement for her. It meshes so well with Dr. Nester's translational scientific and clinical efforts at…
Continue Posted on November 4, 2010 at 8:59am — 6 Comments
Univ of Iowa Pediatric Transplant
Thanks and congrats! to Kathy and Brandi
As Kathy posted on Oct 7th, 2010 Brandi underwent a successful Pediatric renal transplant using a solaris/plasmaphersis preconditioning protocol developed and approved by the multidisciplinary renal transplant team at the University of Iowa. As a group we are very excited about the potential for moving forward in the management of aHUS. We are happy to entertain questions you may have. Thank you for allowing us to be involved with the foundation and…
Continue Posted on October 16, 2010 at 11:42pm — 7 Comments
Comment Wall (4 comments)
- At 6:59pm on October 19, 2009,
Heather Still said… - Thank you for sharing your knowledge with us at the conference. I have attended both conferences and truly appreciate your time and efforts!!!
- At 9:54pm on October 18, 2009, Cheryl Biermann said…
- Thank you so much for your presentation, it really helped us understand some of the confusing things that can occur, you helped us so much! I especially enjoyed your sharing of how you "rig" the dialysis machines for pediatric use, I've always wondered how those wonder ful machines the medical profession uses come about!
- At 11:02pm on August 21, 2009, Linda Burke said…
- Hello,
Looking forward to coming to the U of Iowa for the Oct. 16&17th aHUS conference, will you attend? There's a new Forum that is exploring Seizures with aHUS and Seizures with Dialysis - I'm hoping that you can direct us to a couple of pertinent studies/articles that can help inform us.
- At 8:40pm on June 17, 2009, Linda Burke said…
- Welcome to the new interactive website for the Foundation for Children with atypical HUS. As we share information, inspiration, and insights we hope to gain a better understanding of this disease as we support each other's journey. We're looking forward to your participation and thank you for joining.
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.
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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 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...
• • • • • • • • • • • •
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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