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…Continue
Added by Linda Burke on April 24, 2015 at 9:00pm — No Comments
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…Continue
Added by Cheryl Biermann on April 24, 2015 at 1:02pm — No Comments
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…Continue
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…Continue
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…Continue
Added by Linda Burke on April 17, 2015 at 10:05pm — No Comments
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…Continue
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…Continue
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…Continue
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…Continue
Added by Linda Burke on April 14, 2015 at 8:32am — No Comments
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…Continue
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…Continue
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…Continue
Added by Linda Burke on April 2, 2015 at 8:00pm — No Comments