The Atypical HUS Foundation

It is a hard job to run a patient organisation. There are so many things that a patient organisation has  to do.

In a long forgotten forum discussion, perhaps three years on this site, I contrasted the challenges faced by european aHUS patient organisations with those of the USA's Foundation.

 Europe needed "alliance" *and USA needed some kind  of "defederalisation" into Regions.

It has taken some time but the Foundation's regionalisation  vision  has begun and it is building momentum. It is a very good thing to happen for all with aHUS in the States , for the 120 or so newly on-setting  patients in the coming 12 months ,and the 1200 or more US citizens who have survived their first encounter.

Regional gatherings of people affected aHUS are like all gatherings of  aHUS folk  around the world, they create such a buzz of enthusiasm from  a joyous connection , you only have to look at the attendees postings on the social media afterwards.

But it does not end there..

Yes there have been talks that have increased delegates knowledge about aHUS and how to live with it, and some new life time friendships have begun which can provide mutual support. 

But the engagement has provided a spark of  empowerment for those attending to become  a "franchise", if you wish, of the atypical HUS Foundation.

How that spark begins to glow brighter will depend on one ,or more, of the 30 or so attendees wanting to sustain the group and become more self determining.

Of course the group will need support and resources initially from the "mothership" but slowly and surely, for example , a "Atypical HUS USA South West" organisation could emerge strong and with its own voice, empowered.

The Foundation is a "not for profits"  which I believe has only three legal members. David, Anne and Bill cannot do everything. They depend considerably on volunteers like Linda and Jeff and others to help achieve what the Foundation does.

 When reading this website it is apparent that some members have leadership potential which could be fullfilled at regional level.

Wouldn't it be cool  if ,within say five years ,those potential regional leaders begin knocking on the "not for profits" door and seeking Regional Director places on the Board. 

If that day arrives then I think the regional programme on which the current directors of the Foundation have embarked ,will have trully delivered empowerment to the USA Regions

Those same directors if they achieve nothing else ( which they will) could be satisfied with  what they contributed in their time as National aHUS leaders.

For those attending the Regional meeting this year starting in Nashville ( a place I would love to visit) the chance to be a future leader is there.

But as I said it is a hard job to run a patient organisation. There are so many things that a patient organisation has  to do .

* the European alliance did not stop there and turned into  an international organisation known as the aHUS alliance. More information about the alliance  that can be seen on its new website www.ahusallianceaction.org  It is amazing where a " spark"  can take you! 

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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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