aHUS Awareness Day, September 24, 2015 Outreach Project
Americans, by now you realize the first ever aHUS Awareness Day on September 24, 2015 is fast approaching. We have another project for this special day (or any day you’re available) that we’d like to see everyone get involved in.
For this project, Alyssa Deffenbaugh and I would like everyone to take the aHUS fact sheet provided by the aHUS Alliance and find at least one person that you can give it to. This person or persons could be a politician, media person (TV, newspaper, etc), doctor, nurse, teacher, co-worker, family member, friend, or even your next door neighbor. The idea is to spread awareness of aHUS to someone who doesn't know about aHUS.
The aHUS Alliance worked hard to finalize this aHUS fact sheet that will be available to all countries. Special thanks to Linda Burke (US), Michael and Margriet Eyegenraam (Canada), and Kamal Shah (India) for their efforts. If you are interested in reaching out to people by taking this fact sheet and sharing it, those with last names that start with A – M, please send an email to Alyssa at adeff87@gmail.com. Those with last names that start with N – Z, please send me an email at jeffschmidt331@comcast.net.
We will send you two files, one with aHUS facts that you can pass out (can be printed on the front and back of one sheet of paper), the other contains those facts plus some other key information that you may want to keep.
Update: You can get the aHUS fact sheets right here!
aHUS%20Fact%20Sheet.pdf
aHUS%20Facts%20and%20Key%20Information.pdf
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Comment
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Comment by Linda Burke on September 24, 2015 at 1:19am -
aHUS Alliance Fact sheets are also available on a separate page on this site, just email this link to friends and family:
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Comment by Jeff Schmidt on September 18, 2015 at 11:46pm -
Thanks! And Amen to that Margriet!
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Comment by Margriet Eygenraam on September 18, 2015 at 7:15pm -
Great idea!!!
I can think of many people to give this fact sheet to as most people have no idea what aHUS is.
The more people we can educate about this horrible disease the better it is.
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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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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.
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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...
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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.
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