"Wow! Sounds like a wonderful time! So happy you were able to take part in such a fun activity! Can't beat sunny California!"
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Selma Bennett
- Mazomanie, WI
- United States
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Selma Bennett's Page
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"Wow! Lots of good things to look forward to in 2012! Even if your days have gone to the dogs :) Happy New Year to you and your family!"
"Thank-you for the Thanksgiving greetings and all your wonderful news! Good luck to you and hope that soon we all have more to be thankful for once you recieve your new kidney!
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"Happy Birthday Colette! I understand all the frustrations totally, but we just keep moving forward. I can only hope things will turn around."
"Thanks Linda for everything you do, it was a good weekend full of tears, smiles and lots of hope. Anna and I were very grateful to be able to attend."
"Yes! It was so great to meet you too! Glad you made it home safe and sound. Still trying to process all the information we got at conference. A time full of tears, many smiles and lots of hope!
"
"Looking forward to seeing everyone at the conference, my daughter Anna and I will be attending."
2011 Parent Conference at University of Iowa
October 7, 2011 at 6pm to October 9, 2011 at 7pm
SAVE THE DATE:The University of Iowa has graciously volunteered to host the 3rd "Atypical HUS Parent Conference" . This is a great way to meet the top medical Professionals while socializing with parents at the same time. Here are the specifics:Friday, Oct 7th Early Arrival 7:00pm Meet and Greet Dinner sponsored by the FoundationSaturday, Oct 8th The Confererence at the University of Iowa: (All Meals Provided)Sunday, Oct 9th …See More
Cheryl Biermann left a comment for Selma Bennett"yWelcome here! It's great having family show such an interest, we look forward to anything y ou would like to share-and please do encourage your daughter to join. Several of our adult members have inspired the rest of us with their…"
Linda Burke left a comment for Selma Bennett"Welcome to our website, where aHUS patients and family share information and support.
Please do invite your adult daughter to join, since this website has other adult onset patients and others using home hemodialysis. Best wishes to your…"
Profile Information
- Do you have a friend or family member diagnosed with aHUS?
- Yes
- Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
- No
- My membership request involves business interests as I seek additional aHUS information for business applications.
- no
- My child ( or myself as a patient) is best described as:
- Factor I (CFI)
Comment Wall (3 comments)
- At 7:05pm on October 10, 2011,
Svetlana Finley said… - It was awesome meet you at conference!!!!
- At 3:54pm on June 11, 2011, Cheryl Biermann said…
- yWelcome here! It's great having family show such an interest, we look forward to anything y ou would like to share-and please do encourage your daughter to join. Several of our adult members have inspired the rest of us with their continuing stregnth and courage.
- At 11:35pm on June 7, 2011, Linda Burke said…
Welcome to our website, where aHUS patients and family share information and support.
Please do invite your adult daughter to join, since this website has other adult onset patients and others using home hemodialysis. Best wishes to your family, Linda
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
The Foundation for Children with Atypical HUS 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 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
Help us fight the battle
Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com
Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.
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