The Atypical HUS Foundation

Linda Burke's Comments

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At 9:28am on November 4, 2016, Nic Bannerman said…
Hi Linda - I was wondering if you had heard of the Courageous Parents Network, which is a non profit supporting families of seriously ill children from diagnosis to any decision making required afterwards. My dear friend Blyth Lord started it a few years ago - she lost her beautiful daughter at age 2 to Tay-Sachs. It's a free online resource for families to access and connect with other families facing similar challenges. They've used her videos in training nurses and doctors who don't get to hear the voices of families in this unique situation. They are connected with Global Genes and Rare Disease Network, but I thought this might be something of interest for some members of our group. She's Boston based and very well respected by both children's hospital and mass general for children. She's addressing the needs of families with children under 18 right now, not adults. The psychologist in several of the videos actually counsels Luc, and she has helped his anxiety and fear so much and I'm in awe at what she does (she's in Lexington, Ma). So Blyth and I have had several eerie coincidences and crossed paths - too many for me to ignore. Our family does not need the support of the group, since Luc is thriving and has no special needs outside of his infusion and therapy, but maybe this would be helpful to those who are not near a large city or who may not be comfortable with a group setting or even seeing a therapist.

I helped Blyth with an event and I was blown away by her work and the women who work along side her and I thought of you and your story. She's trying to get her help out to more people. Please have a look and let me know what you think. This is by no means a request for money or help, everything is free. Blyth just wants to get her message out to those who need support. Courageousparentsnetwork.org
At 4:44pm on April 26, 2016, Debbie Griggs said…

Hi Linda,

I'll chat to my husband tonight about Iowa, I would very much like to attend so let me get back to you on that! Thank you for the welcome

Cheers

Deb

At 5:39pm on February 16, 2016, Kim Stapleton said…

Linda,

I really would love to speak w/you tonight or tomorrow if you are available. I have learned a little bit about your already from Bill & Cheryl. Thank you in advance - I love this group just like everyone effected by aHUS does!!!

At 8:28pm on February 2, 2016, barbara adams said…
Thank you Linda for your welcome. I appreciate the info and support I know I will find here.
At 11:01am on November 6, 2015, Dieter Upton said…

Thank you for the welcome Linda.  My wife is stable thanks to Soliris infusions.  Her chronic illnesses, prior to being diagnosed as having aHUS, were frustrating for us to say the least.  At least we are on a stable path now

At 1:01am on October 17, 2015, Rishab Bose said…

Thank you Linda . Yes we are in touch with Mr. kamal shah .Here,aHUS foundation INDIA expressed their inability for financial help. Also, I wanted to ask if needed can we send our sons reports to the panel of doctors for their comments or also get a clear path for future like precautions etc..
Regards ,
Aurobinda Bose

At 9:38pm on August 2, 2015, Grace said…

Thanks for checking in! I'm continuing to do well and feel stronger, planning to return to work on Wednesday. I think I'll appreciate a little more structure in my day, but I know I'll miss all the free time!

At 8:20pm on July 28, 2015, Chrissy said…
This sounds great. My husband and I will make every effort to come to this event. We look forward to meeting you! Thank you for the support
At 8:25pm on July 27, 2015, Chrissy said…
Linda, Thank you for allowing to join this group. What a blessing this has been to feel the start of a connection. Going back to work after this new diagnosis has been challenging. We live in bloomongton, IL and would love to connect with others in the area.
At 4:45pm on July 26, 2015, Delyana Sabeva Yordanova said…

Thank you Linda for letting me be part of your group. You do a great thing! This site is the best source of information and it is nice to meet others who can understand what we are going through.

At 10:21pm on July 2, 2015, Donna Walters, RN said…
Thank you Linda, I look forward to being a part of this organization. I may have just "joined" but I have been checking t0this site often!
At 6:36am on May 14, 2015, Baukje Zijlstra said…

Thank you Linda for letting me join your group!!

At 11:06pm on April 8, 2015, ashley s rhea-tomblin said…
Yes maam I did attend the Seattle meeting which was very informative and a great experience
At 11:36am on February 27, 2015, sabrina molinari ,Isabella Pagan said…
I will definitely post the link for everyone an yes I did see the event for fl I'm going be going to the Tampa one ;)
At 10:47am on February 27, 2015, sabrina molinari ,Isabella Pagan said…
Hello I would just like to share since tomorrow is rare disease day fox news in fort myers FL is going to be telling my daughter story with ahus
At 9:53pm on February 11, 2015, PRERNA BHAT said…
Thankyou Linda . Yes we will get in touch with Mr. kamal shah . Also, I wanted to ask if needed can we send our daughters reports to the panel of doctors for their comments or also get a clear path for future like precautions etc..
Regards ,
Prerna
At 7:56pm on December 27, 2014, Kamal D Shah said…

Thanks so much Linda! Have a great 2015!

At 11:02pm on November 4, 2014, Carly Schmidt said…

Thanks Linda!

At 11:21pm on October 28, 2014, tanya pruden said…
Thank you Linda for everything you do!!
At 4:28am on October 28, 2014, Larry (chip) Pruden said…
I just wanted to say thank you and that me and Tanya had such a wonderful time in Iowa we learned so much and met so many great family's, and to know that there is so much support is absolutely wonderful

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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