The Foundation for Children with Atypical HUS

  We celebrated Matt's 23rd birthday yesterday!  15 months after diagnosis, we still are endlessly grateful that he is with us. 

    I am looking forward to the future with so much enthusiasm for what is in store for him and all of us, with Soliris being available. 

   For anyone who has not attended a meet up, I encourage you to consider attending.  Putting a face and a hug to someone who has walked your path is unbelievable.  To reassure the family who is new to this disease is rewarding and to see and hear the success stories of the veterans and meet the founders has been awe inspiring.   Not to mention how very cathartic and helpful to find out how much help is out there for us!!

   I look forward to attending whenever is possible in 2014, and hope to see familiar faces and meet new friends.

  Blessings to All,

Barb

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Comment by Cheryl Biermann on December 21, 2013 at 9:51pm

Hoo, boy, I hope you told Matt he would certainly give hope to others, especially young adults newly diagnosed, to see how his life is right on schedule, he's living on his own, doing his own thing, traveling, ect. I'd think, and be someone for kids of Nathan's age to look up to.

Comment by Linda Burke on December 20, 2013 at 9:33pm

Hi Barb,

WhooHooo - Happy Birthday to Matt, and sending a hug to you all in honor of the birthday boy!  Talk about the big blessings in this special holiday season!!

On Oct. 25th, 2014 the Foundation is partnering with the great U of Iowa clinical, research, and genetic testing staffs for our big medical info conference - we'll post info on the event as it becomes available.

Comment by Barbara Farcher on December 19, 2013 at 10:04am

Hi Cheryl,  Matt has the same attitude, however, he said he would attend if it would give the next person some hope and inspiration.  Matt would rather not talk about his actual case and actually in his everyday life he never mentions it.  He simply tells people very vague things like "well I got sick and had to leave my job, but I'm fine now"  or I have a dr's appt. Not an infusion lol.  I do believe that he would attend if his schedule allowed. Funny though he does not believe he would learn a thing, (he thinks because he lives it, he's an expert! lol) he thinks that he could bring comfort to someone new to the diagnosis. 

We are all so looking forward to Christmas, Matt will be home for 3 whole days! and obviously this year there is so much to celebrate compared to last year!  Blessings to you and your family.

Comment by Cheryl Biermann on December 18, 2013 at 11:15pm

Hi, Barb!  I just spoke to another mom echoing many of the same things, these meetups have been empowering!  Will Matt be attending sometime?  I know from my boys, especially Nathan, since he is the one with aHUS, they sometimes live through this stuff and would rather leave it at that.  I always hope that one day he will attend, but he is only 13 and this is all old news for him, lol.  I hope your Christmas brings you much joy.

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WELCOME - 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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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...

Help us fight the battle

Your tax-deductible purchase of one or more bracelets will directly fund research to help 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 our research efforts of the Foundation for Children with atypical HUS at www.atypicalhus.org and www.atypicalHUS.net


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:

Foundation for Children with Atypical HUS
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 Linda@atypicalhus.org


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