The Atypical HUS Foundation

Be an aHUS Advocate - Sept 24th is aHUS Awareness Day

     Help make the issues and needs of the aHUS community visible - join others from around the world to send messages that provide insight into the challenges faced by atypical HUS patients.

You alone can best describe the impact of aHUS on your life and your relationships. Who better to explain the many challenges of dealing with aHUS treatment while working, being a parent, or struggling with financial and emotional issue?  Since aHUS is a complex and rare disease, there are many subgroups who have differing issues:  

     *young mothers whose aHUS was triggered by pregnancy,

     *families who juggle home issues with aHUS pediatric patients,

     *dialysis patients who spend countless hours in treatment,

     *and transplant or ESRD patients at various stages of the process - just to name a few.  

While we can presume to understand the myriad stuggles of each group, we need to hear your voice.  Authentic patient viewpoints, varied and rich with experience, are essential to developing better educational materials and patient services.

Lend your voice with an outpouring of social media between now and September 24th, post comments regarding aHUSon your Facebook page, and ask others to share.  Add photos, use Twitter or Instagram or other outlets - communicating the 'aHUS experience' with the personal touch and insights that only you can explain to the world. 

Here are some tools and resources to let you reach out to the world, and Be an aHUS Advocate!

The 1st international aHUS Awareness Day will be marked on September 24, 2015 as an outreach and education initiative of the aHUS Alliance, a collaborative group of 14 nations. From the aHUS Alliance's press release on August 12, 2015:

The theme for aHUS Awareness Day is 'Communication'.  There are many common concerns that affect aHUS patients regardless of nation, culture, or language such as:  the need for quick and accurate diagnosis, access to treatment and healthcare options, shared data and information among aHUS researchers worldwide, and increased physician education about atypical HUS.  Noted Linda Burke, an American representative with the aHUS Alliance, "Issues facing rare disease patients affect not only the individual with the disease, but also include the social, financial and societal impact among family members, the workplace, the healthcare system, and many other areas."

At the core of patient treatment, caregiver concerns, medical team coordination, and disease research is communication of information and issues.  Len Woodward, a UK representative of the aHUS Alliance remarked, "Our goal for international aHUS Awareness Day was to provide families affected by aHUS and patient organizations to have an opportunity to join together and to shine a spotlight on aHUS around the world.  We encourage medical and research teams, pharma, healthcare professionals, geneticists and policy makers to communicate their own message about aHUS issues and their team's commitment to improved patient outcomes."

Track trends on social media, and follow aHUS Awareness Day info and activities:

To DOWNLOAD the aHUS Awareness Day graphic (jpeg photo, as above, from the press release) and to view the full PRNewswire:

http://www.prnewswire.com/news-releases/ahus-awareness-day-is-24-se...

EVERYONE is invited to participate, in this 10 Day Countdown to aHUS Awareness Day, 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 your country's 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 2Highlight 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  

#complementinhibitor

 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, Len Woodward of aHUSUK for #complement inhibitor and to Anne Bruns of The Atypical HUS Foundation for #aHUSaware.  Please add #aHUSAlliance and @aHUSAlliance to your outreach efforts - thank you!

aHUS Alliance - global aHUS Awareness Day info and activities:

Facebook:  aHUS Alliance       Twitter:  @aHUSAlliance

#aHUSday  and   #aHUS24Sept  

Contact:  info@aHUSAlliance.org

aHUS Awareness Day in America, The Atypical HUS Foundation:  Click Link FMI

Follow The Atypical HUS Foundation:

Facebook:    The Atypical HUS Foundation     Twitter:   The Atypical HUS Foundation

 

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

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

aHUS Alliance Fact Sheet

A USA Project to Spread Awareness about aHUS

Project Lead:  Jeff Schmidt

Read Jeff's blog FMI

 

University of Iowa – a Longitudinal Study

Innovative Biomarker Research into aHUS, MORL

In Proud Support of:

 

VISIT the aHUS-Specific webpage at RareConnect

a global Rare Disease Initiative of EURORDIS and NORD

JOIN THE CONVERSATION

aHUS Global Community at RareConnect

Connect in 5 Languages

 

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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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