The Atypical HUS Foundation

Barbara Farcher
  • Female
  • Saugerties, NY
  • United States
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Barbara Farcher's Friends

  • Lisa Reed
  • Sarah Woollard
  • Megan Russo
  • Jennifer Christopher
  • vicki adler
  • Alyssa Deffenbaugh
  • Jill Ziegler
  • Cheryl Biermann
  • Patrick Brophy
  • Donna Kolp
  • Linda Burke
 

Barbara Farcher's Page

Latest Activity

Barbara Farcher posted a status
"ASN-Convention- American Society of Nephrology! The Foundation is actively getting the word out that we, as a support system, exist!"
Nov 17, 2016
Barbara Farcher is attending Linda Burke's event
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aHUS Family Conference - IOWA at U of Iowa campus, and Iowa City Sheraton Hotel

November 4, 2016 at 12pm to November 6, 2016 at 12pm
The Atypical HUS Foundation is pleased to announce that the aHUS Family Conference, in conjunction with The University of Iowa, will be held in Iowa City, Iowa on November 4-6, 2016 at the Sheraton Iowa City Hotel.Usually held every 2 years, the aHUS Family conference is the only aHUS patient-centered meeting with multiple medical presentations by aHUS experts on topics of diagnosis, treatment, genetics, and more. Registration is limited, FMI see details at the Eventbrite registration site: …See More
Oct 17, 2016
Sarah Woollard and Barbara Farcher are now friends
Oct 12, 2016
Barbara Farcher commented on Barbara Farcher's blog post Hemotology Convention Review
"Hi Len, the John Hopkins doctor actually mentioned that there is a "TEST" to qualify a diagnosis of aHUS. He said it accurately diagnosis aHUS vs TTP so treatment can get started. That test has a 24 hour turnaround time! The lab at Cinn.…"
Jan 2, 2016
Len Woodward commented on Barbara Farcher's blog post Hemotology Convention Review
"Very interesting account of the conference and the therapy developments appearing now. Let's hope they prove clinically effective and can enter the market at a price that health funders regard as cost effective, value for money or affordable so…"
Jan 2, 2016
Barbara Farcher posted a status
"Thank you to the foundation for allowing me to attend the 2015 ASH convention- Please read my blog post to hear about the pipeline!"
Dec 28, 2015
Barbara Farcher posted a blog post

Hemotology Convention Review

Hello Everyone, I decided to caption this blog with Hemotology Convention for those (like me) who didn't know what "ASH" stands for.ASH- Is the American Society of Hemotology. Their International convention was in Orlando and for the first time Our Foundation had a booth! I was honored to be asked to represent our foundation along with Megan Russo. I feel we were a great team as I am the caregiver, and she is the patient. It was awsome to see all the doctors light up when we would say "Megan is…See More
Dec 28, 2015
Barbara Farcher posted a status
"Have a wonderful event in Orlando!!! How fabulous, hosting our first pediatric event! Can't wait to see the pic's and hear the stories."
Oct 5, 2015
Barbara Farcher posted a status
"HAPPY NATIONAL AWARENESS DAY!!! For all of us who live with this disease and for the many who will eventualy join us, today is a great day!"
Sep 24, 2015
Barbara Farcher posted a status
"there is so much to be excited about with all the progress our wonderful foundation is making!!"
Sep 4, 2015
Barbara Farcher replied to Linda Montes's discussion Trip to Florida
"Also ....call your One Source Nurse Case manager ...they may be able to answer some of your questions as well."
Jul 13, 2015
Barbara Farcher posted a status
"Who's gong to Boston??? it's the next stop on the aHUS Tour 2015!! So who will be joining us??"
Jul 1, 2015
Barbara Farcher posted a blog post

Pittsburgh Meet Up!

I just returned from the most recent stop on the AHUS Tour, Pittsburgh PA! For those of you who have attended meet-up before...you know that as part of the friday evening "icebreakers" they ask everyone to share an embarrasing moment...well mine this week was I MISSED MY FLIGHT!! Holy Cow....I arrived at the airport without my licnese, which I had taken out of my wallet the previous day...and didn't put back into my wallet.....OH NO!!! So I jumped in my car in Albany NY and drove as quickly as…See More
May 18, 2015
Barbara Farcher posted a status
"The Pittsburgh Meetup is just wrapping up!!! As Always....how amazing meeting the other families....Strength in Numbers!!!"
May 16, 2015
Barbara Farcher posted a photo
May 16, 2015
Barbara Farcher posted a status
"Looking forward to the tampa meetup!! I learn so much each time not to mention meeting more "family" members!"
May 1, 2015

Profile Information

Birthday
June 19
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.
not for business applications
My child ( or myself as a patient) is best described as:
Not Tested, Interested in Undergoing Genetic Testing

thanks for the welcome, I wish we didn't have to meet because of having something so awful in common, but it's comforting to know I am not alone.  My Son was extremely fortunate to receive Soliris within 72 hours of presenting.  He was REALLY sick but is showing improvement Thank God.  The doctors arent happy with his improvement but I am! He came out of ICU in 11 days.  We are so new to this that my head is spinning but am trying to read, read, read. 

    Again, thanks for the support and thank goodness for such an informative site!

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Barbara Farcher's Blog

Hemotology Convention Review

Hello Everyone, I decided to caption this blog with Hemotology Convention for those (like me) who didn't know what "ASH" stands for.

ASH- Is the American Society of Hemotology. Their International convention was in Orlando and for the first time Our Foundation had a booth! I was honored to be asked to represent our foundation along with Megan Russo. I feel we were a great team as I am the caregiver, and she is the patient. It was awsome to see all the doctors light up when we would say… Continue

Posted on December 28, 2015 at 2:54pm — 2 Comments

Pittsburgh Meet Up!

I just returned from the most recent stop on the AHUS Tour, Pittsburgh PA! For those of you who have attended meet-up before...you know that as part of the friday evening "icebreakers" they ask everyone to share an embarrasing moment...well mine this week was I MISSED MY FLIGHT!! Holy Cow....I arrived at the airport without my licnese, which I had taken out of my wallet the previous day...and didn't put back into my wallet.....OH NO!!! So I jumped in my car in Albany NY and drove as quickly as… Continue

Posted on May 18, 2015 at 11:35am

aHUS Meetup in Pensacola!

First let me say- I NEVER tire of attending our "family" meet ups! I'm not sure if it's because I am a social butterfly at heart, and love meeting new people and making new friends, or if it's the fact that I learn something new or am reminded of something I had forgotten, or both!

We arrived Friday March 27, to WINDY but beautiful blue skies, and turquoise waters at the Gulf front Hilton Pensacola. We had our private Gulf front room for a wonderful "Welcome Dinner" where we heard the… Continue

Posted on April 8, 2015 at 9:48am — 1 Comment

Update

  We celebrated Matt's 23rd birthday yesterday!  15 months after diagnosis, we still are endlessly grateful that he is with us. 

    I am looking forward to the future with so much enthusiasm for what is in store for him and all of us, with Soliris being available. 

   For anyone who has not attended a meet up, I encourage you to consider attending.  Putting a face and a hug to someone who has walked your path is unbelievable.  To reassure the family who is new to this disease…

Continue

Posted on December 18, 2013 at 10:40am — 4 Comments

Comment Wall (9 comments)

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At 9:09pm on December 15, 2014, Megan Russo said…

Hi Barbara! I am semi new to the disease. I was diagnosed this summer with aHUS. I've seen the bootcamp though and am getting pretty involved in advocacy work. My case manager asked me if I would be interested in speaking at some of the conferences, so maybe I'll see you at some! They're supposed to be having a few in NY in 2015! 

At 9:00pm on August 22, 2014, Stephanie Clabough said…

Thank you for the welcome Barbara. It has been such a shock to learn of this disease. We parents certainly do have a bond! I am SO thankful for Soliris! I have high hopes my little girl (and all children affected by this) will be OK after all. 

At 10:32am on May 7, 2014, Jill Ziegler said…
Hi Barbara!
Welcome to the site! This is our second family!!!! Glad to hear you will be at the ohio meet up! Looking forward to meeting you. Til then if you have any questions or want to chat, I'm here!!
Jill
At 9:26am on December 4, 2012, Linda Burke said…

Hi Barbara,

Thanks to Jennifer Christopher's interest in connecting with other adult aHUS patients, I've created a new forum for this website - a featured Forum that will keep the issues of adult aHUS patients at the front and center!  So that others may more easily share infomation, I'd appreciate it if you'd consider adding (or transferring) your comments onto this more visible spot.  I've invited others with the message below:

'Our thanks to Jennifer Christopher for starting this important aspect of outreach and discussion among aHUS adults!  Her insight has highlighted a need for a dedicated 'Forum for Adult aHUS Patients', so please visit our newly featured forum for adult aHUS patients to share their journey and to post concerns and questions.

Join the conversation at http://atypicalhus.ning.com/forum/topics/adults-with-ahus .'

At 1:56am on October 15, 2012, Patrick Brophy said…

Hi Barbara. Sorry to hear about your son. I am glad he is out of the ICU. I would be happy to set up some time to talk if you would like. Pat Brophy Univ of Iowa. Please email me at patrick-brophy@uiowa.edu and let me know.

At 12:34pm on October 14, 2012, Svetlana Finley said…

Welcome here, i hope your son will get better very soon, so far i never hear that Soliris doesn't work for treatment. 

At 9:45pm on October 13, 2012, Linda Burke said…

Hi Barbara,

Please consider posting this request for others' stories as a Home Page blog, to highlight your questions - the 'add a blog post' option is at the bottom of the Blog post box.  That will showcase your request for specific information.  W encourage you to connect via ourFoundation  Facebook page as well asto  participate in the conversation at the global aHUS community on RareConnect (see our Links box on the Home Page).

Actually, our family did see the initial 'see saw' of lab values during our son Skyler's first few weeks using Soliris while his body functions were so unstable.  We'd rejoice in a great number for platelets, but then the creatinine would bump up a bit for example. ( My family's story is in the profile of my personal page.)

I can point you to scientific data regarding the effectiveness of Soliris in our research forum and the U of Iowa videos,(also try www.ahussource and www.soliris.net, Alexion websites) but can't address your other concerns. The only journal articles or scientific investigation data that I've seen regarding solid info that Soliris was  ineffective  for a specific case were usually tied to transplantation complications where Soliris was tried as a last ditch effort to save a transplanted kidney, and reports seemed to indicate  that Soliris was given too late in the case's progressive downward spiral.  If  someone on the website has other research, we'd appreciate it if you'd here  list links to those journal articles or studies and share that information.  Looking forward to imroved news from you soon.

At 8:25am on October 12, 2012, Cheryl Biermann said…

Welcome to the aHus family, I am so sorry your son is sick with this!  Ditto to everthing Linda told you.  Soliris is a huge improvement for our patients, thankfully, word is getting out and people are being help before the damage accumulates.  Many of us check the site daily, so if you need to just talk or ask questions, you will probably get a response by the next day, at the latest.

At 12:46pm on October 11, 2012, Linda Burke said…

Hi Barbara,

So sorry to hear that your son Matthew is hospitalized.  Please read the tab 'aHUS Bootcamp' for a detailied overview of aHUS - it will help outline the most important points ofr your adult son.  The Iowa videos from our home Page are another great source of information that should assist your understanding of Matthew's medical situation.  I'm glad that his care team has begun Soliris, and that you've contacted Alexion on your son's behalf.

Additionally, we have set up a 'Doc to Doc Directory'' on our Home Page's left hand column - it lists contact info for volunteer docs with aHUS experience who offer free phone/email consults with other physicians wishing to learn more about this complex rare disease.  Please print/send/share our Doc to Doc Directory's contact info with Matthew's care team in Texas at Ben Taub Hospital Houston Medical (Dr Mark Udden (hemo)  and Dr Sheik-ahmad (neph) and associates).

Please keep us posted, and feel free to add a blog post to our Home Page with Matthew's story and your questions.

 
 
 

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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