The Atypical HUS Foundation

April 2015 Blog Posts (15)

aHUS Global Alliance – Keeping aHUS Research Connected

     In the midst of aHUS challenges, keep in mind that interesting aHUS research is not just done in our own nation, but by a cadre of fabulous professionals, research organizations, and biopharmaceuticals  all over the world.   Various nations now have joined collaboratively, networking aHUS-specific patient…

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Added by Linda Burke on April 24, 2015 at 9:00pm — No Comments

Reporting Adverse Reactions

Hi all, today I wanted to share with you something that has been popping on via the fb closed page.  It seems many people are having severe migraine headaches which they are attributing to Soliris, since it is a noted, common side effect.  That may be the case, but please report these to your One Source Nurses. 

One of the things that is made clear by following the discussion threads over several months is that the timing between the headaches and the infusions are all over…

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Added by Cheryl Biermann on April 24, 2015 at 1:02pm — No Comments

Seattle Meetup

When I think of Seattle, I think of rain, the Space Needle, fish being tossed in the market, the harbor filled with ferries, and yes for just a moment…Grey’s Anatomy!  I hadn't considered the significant number of aHUS patients I would meet.  Nor how many of them would be from neighboring areas versus flying in because it was the most convenient meetup to attend.

I’ve attended several meet-ups over the last couple years, never as the guest speaker though.  I found myself listening to…

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Added by Crystal Ferreira on April 21, 2015 at 6:21pm — 3 Comments

Salt Lake City Meetup

This weekend I had the opportunity to attend an aHUS meetup here in my own area. It was a smaller group but was just as effective in providing great conversation and building friendships. Except for one of the One Source case managers I had already met everyone at previous meetups or here at home so it was very much like a family reunion of sorts. In fact, I've had most of them to my house for an aHUS BBQ! :) I think we need another one!

Dr. Ruth McDonald is a fantastic pediatric…

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Added by Anne Bruns on April 21, 2015 at 1:20am — 2 Comments

It’s Time for EDU support for aHUS Pediatric Patients!

     Now is a great time of year for caregivers of pediatric aHUS patients to engage public school staff in conversations regarding an IHP.   What’s that?  An IHP or Individual Health Plan is an extremely useful tool for individuals with special health issues, allowing a formal and organized format for school personnel to help maintain a healthy learning…

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Added by Linda Burke on April 17, 2015 at 10:05pm — No Comments

aHUS meetups - they feel like home

As I am packing for my aHUS meetup in Salt Lake City this weekend, I can't help but be reflective of this journey. Ethan was diagnosed in January 2013 and my sister was encouraging me to attend a meetup that February in New Jersey. I couldn't. I was still terrified. I wanted answers but I still was trying to figure out the best schedule to give him his daily 13 meds. I couldn't leave his side. I wanted information. I could still hardly pronounce Eculizumab. I couldn't bring myself to hear…

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Added by Anne Bruns on April 16, 2015 at 11:08pm — 2 Comments

Ontario, Canada - Response From the Office of the Health Minister Dr. Eric Hoskins

Those wondering what's going on in Ontario, Canada with their quest to get Soliris, here is the public response from Dr. Hoskins' office to one of my posts to his Facebook page. It's full of a lot of stuff hard to read but he does say that Soliris is available to those who qualify. And he provides a link to what he says describes the conditions to receive Soliris. But if you go to this link you will see that they are talking about Soliris for PNH, not aHUS. Of…

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Added by Jeff Schmidt on April 16, 2015 at 6:30pm — 2 Comments

Getting excited about the New Orleans Regional Meeting in June 2015!

I have been really excited to see that people have been attending the regional meetings in various cities throughout the United States.  I must say, I am really excited (and nervous) to be speaking at the New Orleans meetup on June 6, 2015.  It will be on of the Lamigo Family's last "hurrah" in the great city of New Orleans.  My husband is in the Marine Corps and in July 2015, we will be making the move to Corpus Christ, TX.  I am excited, nervous and just plain freaking out about all that…

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Added by Paula Blanchard Lamigo on April 15, 2015 at 4:21pm — 4 Comments

April 14th PRNewswire from Omeros about OMS721

News regarding OMS721 – EU regulatory body approval for compassionate use (and our associated content)

 Excerpts from Omeros Corporation’s PRNewswire:

SEATTLE, April 14, 2015 /PRNewswire/ -- Omeros Corporation (NASDAQ: OMER) today announced that the presiding European regulatory authority has approved the company's investigational product OMS721 for compassionate use. OMS721 is Omeros' lead…

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Added by Linda Burke on April 14, 2015 at 8:32am — No Comments

Global Genes North Carolina Meet up

North Carolina!!!! You showed up! Wow....just unbelievable meet up. If you didn't meet up this time you missed out! We had one of the biggest groups I've seen to date. First a huge thank you to Alexion, the one source team and Global Genes for help making these events possible. Every single one I attend, I find long lost brothers and sisters who are fighting the Ahus battle alone. But we find each other and are family! And together as we share information and resources, we win this battle. Ahus… Continue

Added by Jill Ziegler on April 12, 2015 at 2:13pm — 1 Comment

Safeguarding the aHUS Community

      In this day of cyber-threats and the ever-increasing need for making sure that your online profile is protected across the internet and beyond, The Atypical HUS Foundation would like to remind you to be cautious in sharing your home email accounts and contact information. Hard as it to imagine, websites big and small, both for e-commerce and for personal use, have had to deal with ever increasing layers of 'cyber-security'.

     In late 2010, our online aHUS community became…

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Added by Linda Burke on April 8, 2015 at 6:00pm — 1 Comment

aHUS Meet Ups

I want to take a moment to encourage everyone to make at least one aHUS Meet Up this year...now, it's early in the year, all involved have worked hard to make these events affordable, educational and a place for a tremendous outpouring of support.

Even if, like us, you battled years alone, you got this, ect. you deserve this opportunity.  People used to tell us, "Take a break.", "Get a manicure.",  "Go out to eat, we'll watch the kids." , "Get out of that hospital for…

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Added by Cheryl Biermann on April 8, 2015 at 2:51pm — 1 Comment

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

Added by Barbara Farcher on April 8, 2015 at 9:48am — 1 Comment

NORD and Global Genes OPEN Registration for More aHUS Meetings!

 aHUS Regional Meetings – More  Info

RSVP - more opportunities - NOW OPEN

 

     The Atypical HUS Foundation is pleased to announce that NORD has just opened registration for the NORD TEANECK New Jersey  aHUS regional meeting on June…

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Added by Linda Burke on April 2, 2015 at 8:00pm — No Comments

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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.

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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.
  
• • • • • • • • • • • •
  
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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