The Atypical HUS Foundation

July 2015 Blog Posts (10)

aHUS Baltimore meet-up

This was such a wonderful weekend and a great experience in Baltimore for those in attendance at the meet-up.  I was lucky to meet a few other patients, and some amazing caregivers.  I'm always so blown away by the sense of community we all have and how much we all have to bring to the table.  The hotel was beautiful, and I had never been to Baltimore, so it was exciting to finally get to see the great city! 

Friday we had dinner, which was delicious!  We also got to hear Diane…

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Added by Alyssa Deffenbaugh on July 28, 2015 at 12:16pm — No Comments

Ra Pharmaceutical’s C5 Complement Inhibitor: RA101495

News in the Biotech and Orphan Drug Arena

     Based in Cambridge Massachusetts, Ra Pharmaceuticals, notes complement inhibitors and other immune targets among their Current Programs.  It appears that PNH (Paroxysmal nocturnal hemoglobinuria) patients are Ra’s immediate targeted patient population, with RA101495…

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Added by Linda Burke on July 26, 2015 at 4:00pm — No Comments

Some news from France

Lou-Anne is grafted for 4 years (july 15th). What a joy to have a little girl since grown normally and is in top form.

We…

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Added by Nicolas on July 26, 2015 at 5:34am — 2 Comments

Breaking NEWS – OMS721 just granted ‘Fast Track’ approval by the FDA

     A July 23, 2015 PRNewsire from Omeros Corporation has announced the U.S. Food and Drug Administration’s action to grant Fast Track designation to OMS721, their MASP-2  drug currently in clinical trial for aHUS patients.

     “FDA's Fast Track designation of OMS721 for aHUS reflects the unmet need associated with this disease and recognizes the drug's potential as an important option for the…

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Added by Linda Burke on July 23, 2015 at 4:30pm — No Comments

aHUS Global Genes Meetup Boston

Two weeks ago about 30 of us gathered on the MIT campus in Cambridge, MA for the Global Genes meetup. It was my third meeting in three years, but my first local one. I was thrilled to present as a Patient Advocate on behalf of the Foundation. My husband and I were there for our son, Jack, who presented eight years ago at age 13 (he did not attend).

This was a first time event for many attendees.The majority of attendees were patients themselves, and all adults at time of diagnosis.…

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Added by Dana M Simone on July 19, 2015 at 5:43pm — 1 Comment

LONDON Mtg. NEWS - 4 Complement Inhibitors Possible in the aHUS Pipeline (Aug: updated to 5!)

  

     Dr. Wynne Weston-Davies of Volution Immuno Pharmaceuticals presented information on potential new aHUS therapeutics at the June 28th meeting of the aHUS Alliance convened in London.  Volution is a privately held, Swiss-based firm whose focus is development of anti-complement and anti-inflammatory molecules that may be utilized for the treatment of a wide range of rare diseases. Dr. Weston-Davies…

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Added by Linda Burke on July 12, 2015 at 5:00pm — 1 Comment

Transplant Time!

On Sunday morning, June 7th, I was woken at 6:30 by the phone ringing. It was a transplant coordinator calling about a deceased donor kidney. Was I interested? Of course! It was the first call I had received in nearly a year. Because more candidates are called than kidneys available, I asked how close to the top I was. The coordinator was vague, but said she thought I had a good chance at being #1 or 2, but I wouldn’t hear anything further until evening. So I spent the day in…

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Added by Grace on July 10, 2015 at 4:18pm — 6 Comments

Atypical HUS Foundation Survey

Hello! As the new Atypical HUS Foundation Board moves into planning stages for next year and beyond, we would like your feedback on how we can better serve the aHUS population. Please visit this link to complete the survey. We will be collecting answers until August 1st. Please do not leave comments here as they will not be able to be included in the survey. Thank you for taking your time to complete this- our number one goal is to serve the aHUS community is the best possible…

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Added by Anne Bruns on July 7, 2015 at 7:37pm — No Comments

San Francisco meetup hosted by Global Genes

This weekend was full of communities coming together in great numbers, however our small but strong group of about 40 gathered taking another step in the defeat over aHUS.  These individuals have done remarkably in their efforts to continue living their lives and improving the lives of others so that they all might gain independence from their aHUS diagnoses.  Although there are adjustments to be made, aHUS is just that, a diagnoses, not the definition of who that person is or should be.  We…

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Added by Crystal Ferreira on July 3, 2015 at 10:00pm — No Comments

NORD patient meeting in Teaneck, New Jersey

Another successful patient meeting in the Ahus foundation books!! This meeting held by NORD and led by Allie Freitas was another amazing weekend of patient advocacy, support and education. I continue to be amazed by my fellow Ahus patients and their caregivers. When I think of the families I met at this meeting and every meeting I've attended for that matter, resilency is the word that pops in my head. The stories of struggle and courage that my brothers and sisters in the Ahus world share,… Continue

Added by Jill Ziegler on July 1, 2015 at 1:24pm — No Comments

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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.

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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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