The Atypical HUS Foundation

Sept 24 Marks the first aHUS Awareness Day!

 Join In - 1st  annual aHUS Awareness Day, set for Sept 24, 2015!

     The aHUS Alliance is an international federation of 14 nations dedicated to promoting aHUS advocacy around the world.  On 24 September 2015, help us raise visibility for patient needs and issues by joining in to post, blog, and Tweet about the aHUS community.

     Between now and aHUS Awareness Day, you’ll see commentary across social media and on aHUS patient organization websites.  Help inform the world about what it’s like to be diagnosed with the rare disease atypical HUS, what challenges you face in life, and the impact of aHUS on families, relationships, and school or work.   Raise your voice, raise awareness!

 

The Importance of aHUS Awareness Day,  Sept 24

A Press Release from the aHUS Alliance  (International group of aHUS Patient Organizations)   

PRNewswire August 12, 2015  Click the title BELOW for the full press release, hosted image (to download)

aHUS Awareness Day is 24 September, Raising Visibility

for Rare Disease Patients with Atypical HUS

                                                            Follow global aHUS Awareness Day info and activities:        

Facebook:  aHUS Alliance                 Twitter:  @aHUSAlliance    #aHUSday  and   #aHUS24Sept  

Connect with the aHUS Alliance:  info@aHUSAlliance.org

 

 

Twitter- 10 Day Countdown to aHUS Awareness Day

(Begins Sept 15, ends on Sept 24th)

EVERYONE is invited to participate, on Twitter or across social media!  To amplify messaging, here’s a suggested framework:

Day 1 (Sept 15)   Announcing aHUS Awareness Day.  (Add your social media message about aHUS awareness)         #aHUSday   and #aHUS24Sept    @aHUSAlliance

Day 2 (Sept 16)   Raise visibility for your nation’s aHUS patient organization.  Highlight aHUS issues, such as access to treatment options or concerns/projects/aHUS developments.  Great opportunity for others in the aHUS arena (rare or renal groups, universities, research teams, etc.   #aHUS(country name)     #aHUSissues    other (see Hashtag list below)

 

Day 3 (Sept 17)  Focus: Needs and issues for aHUS families and patients   #aHUSpatients   #aHUSfamilies

 

Day 4 (Sept 18) Focus: aHUS Advocacy, promote common concerns around the world or in your nation.  #aHUSadvocacy or   #aHUSalliance

 

Day 5 (Sept 19)  Focus:  aHUS research or genetics    #aHUSresearch  or #aHUSgenetics

 

Day 6 (Sept 20)  Focus:  Same as Day 2.  Highlight another meaningful awareness area.

Day 7 (Sept 21)  Focus: aHUS Diagnosis (speed, accuracy, aHUS facts)   #aHUSdiagnosis, aHUSfacts

 

Day 8 (Sept 22)  Focus: aHUS  issues specific to children or adults   #aHUSkids,   #aHUSadults (Adults in the workplace- time lost to illness/treatment, caregiver issues, sibling concerns, aHUS kids at school, etc.) 

 

Day 9 (Sept 23)  Focus:  Same as Day 2.  Highlight another meaningful awareness area.

Day 10 (Sept 24)   It’s Here!  Why is aHUS Awareness Day important to you ?

 

(Sample Hashtags, Suggestions)

 

#aHUSalliance                                       #aHUSaction                                          #aHUSaware

 

#aHUSissues                                         #aHUSresearch                                      #aHUSdiagnosis

 

#aHUSfamilies                                       #aHUSpatients                                        #aHUSfacts     

     

#aHUSpolicy                                          #aHUSgenetics                                      #aHUSorphandrug 

  

#aHUSkids                                             #saveaHUSlives                                     #aHUStreatment

 

Special Thanks:  The 10 Day Twitter Countdown was suggested by Dana Simone of The Atypical HUS Foundation in America.  Thanks also to Kerri Grey of aPSGA, Australian for #saveaHUSlives and to Anne Bruns of The Atypical HUS Foundation for #aHUSaware.  Please add @aHUSAlliance to your outreach efforts - thank you!

 

 

aHUS Fact Sheet

and aHUS Sept. 24 Graphic Available with Text in Multiple Languages

Contact the aHUS Alliance:  info@aHUSAlliance.org

 

 

aHUS Awareness Day – USA Projects: The Atypical HUS Foundation

 

aHUS Messages to the World

Video project, created by The Atypical HUS Foundation

Project Leads:  Jeff Schmidt and Alyssa Deffenbaugh  

Read Jeff Schmidt’s blog, and send in your photo with text before 9/12

to create your personalized Air Mail Envelope graphic

aHUS Kids Project - Artwork:  the aHUS Experience in America

Creative Expressions Project

Project Leads:  Jeff Schmidt and Alyssa Deffenbaugh 

Read the blog for participation details

 

University of Iowa – a Longitudinal Study

Innovative Biomarker Research into aHUS, MORL

 

 

 

 

 

 

 

 

 

 

Views: 136

Comment

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Comment by Len Woodward on September 2, 2015 at 2:30am

Excellent plans needing excellent deployment by all.

Comment by Dana M Simone on September 1, 2015 at 6:49pm
Amazing how much has already come together for the big day! You are an effective project leader, Linda! Thank you:).

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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