The Atypical HUS Foundation

Linda Burke
  • Female
  • Cape Elizabeth, ME
  • United States
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Linda Burke's Discussions

ADULTS with aHUS
191 Replies

Started this discussion. Last reply by Donnan Oyler May 15.

aHUS Complications: Potential Impact for Multiple Organs
2 Replies

Started this discussion. Last reply by Grace Sep 30, 2014.

TRALI - Precautionary Note about Infusion of Blood Products
4 Replies

Started this discussion. Last reply by Linda Burke Jun 29, 2009.

 

Linda Burke's Page

Latest Activity

Linda Burke left a comment for Tyila Cooks
"Welcome, we hope you find this site to be a source of information and support.  Please check out our aHUS resource list."
Sep 13
Linda Burke left a comment for Mimi Holsinger
"Welcome, we hope you find this site to be a source of information and support.  Please check out our aHUS resource list."
Sep 13
Linda Burke left a comment for Suresh V S
"Welcome, we hope you find this site to be a source of information and support.  Please check out our aHUS resource list."
Sep 13
Linda Burke left a comment for Lily Arnold
"Welcome Lily, and please do check out the heading under aHUS Materials & Info."
Aug 19
Linda Burke left a comment for Lynne Trauntvein
"Welcome, we hope you find this site to be a source of information and support.  Please check out our aHUS resource list."
Aug 2
Linda Burke left a comment for Sarah Arnold
"Hi there,  and sorry to hear that Lily has been diagnosed with aHUS recently.  Welcome to this site, which we hope provides a source of information.  Please check out the aHUS Bootcamp on our aHUS resource list."
Jul 24
Linda Burke left a comment for margaret L'Heureux
"Hi there,  and sorry to hear that your grandchild has been diagnosed with aHUS recently.  Welcome to this site, which we hope provides a source of information.  Please check out the aHUS Bootcamp on our aHUS resource list."
Jul 19
Linda Burke left a comment for Jami Danell Yeskovich
"Sorry to hear that you needed a liver transplant, and then aHUS was diagnosed  Welcome to this site, which we hope provides a source of information.  Please check out the aHUS Bootcamp on our aHUS resource list."
Jul 18
Linda Burke left a comment for Joe Henderson
"Sorry to hear that your 4 year old has been diagnosed with aHUS, but glad to hear that Dr. Dixon is heading your care team.  Welcome to this site, which we hope provides a source of information.  Please check out the aHUS Bootcamp on…"
Jul 18
Linda Burke left a comment for James Seretti
"Hi James,  good to have you here.  You might want to check out the tab on aHUS Materials & Info, but I think you also might want to look at the patient & caregiver supports on the resource list at…"
Jul 14
Linda Burke left a comment for Fran Pekor
"Sorry to hear that your daughter is in the hospital, and Jordan has already checked in with us.  Welcome to this site, which we hope provides a source of information.  Please check out the aHUS Bootcamp on our aHUS resource list."
Jul 14
Linda Burke left a comment for Jordan Pekor
"Hi Jordan, Sorry to hear that your daughter is in the hospital.  Welcome to this site, which we hope provides a source of information.  Please check out our aHUS resource list."
Jul 6
Linda Burke left a comment for Anna Neycheva
"Welcome, we hope you find this site to be a source of information and support.  Please check out our aHUS resource list."
Jul 6
Linda Burke left a comment for Ida Danielle Shalosky
"Welcome, we hope you find this site to be a source of information and support.  Please check out our aHUS resource list."
Jul 1
Linda Burke and Emily Hermann are now friends
Jun 30
Emily Hermann left a comment for Linda Burke
"Thank you Linda!"
Jun 28

Profile Information

Birthday
August 24
Do you have a friend or family member diagnosed with aHUS?
Immediate Family
I am a caregiver for an aHUS patient
Yes: for a pediatric aHUS patient
I am an adult aHUS patient.
No
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 H (CFH) /Protein (Gene)

Our Family's Journey with aHUS

As mother to two young boys diagnosed with aHUS, I've been blessed to have wonderful family, friends, and medical personnel offer support and encouragement as we've struggled to understand and to cope with this rare disease.


Hunter was diagnosed Sept. 2003 at 10 months of age and was in continual treatment until his death in May 2008 at age 5 and a half years old (attempted kidney/liver transplant). Hunter was a clever and handsome boy whose zest for life usually meant he was in constant motion - preferably outdoors! Our wonderful team of pediatric nephrologists, combined with excellent nursing care and support staff, allowed Hunter to enjoy a rich and joyful quality of life. Some of my husband's favorite photos show Hunter laughing with mischevous eyes and a smile that would just light up the room! Symptoms of his disease were few so even though Hunter had over 600 hospital visits in his short life, we celebrated the beauty and achievements that each new day would bring. Taught with great skill and compassion by the terrific staff at his Montessori school, Hunter found both knowledge and happiness there.


Sadly, Hunter's little brother Skyler was diagnosed with an active case of atypical HUS in March 2009, just 10 months after Hunter's death. Almost two years ago my husband and I agreed that it was best to send off Skyler's blood sample for genetic testing at the University of Iowa. If Skyler had the same genetic mutation (factor H) as his brother Hunter, that knowledge would be powerful information in terms of any potential problems. So, we were aware that the sword of Damocles was hanging over all our heads. No one knows the triggering mechanisms for aHUS, and we were stunned to hear that Skyler's lab tests revealed that somehow our worst nightmare was starting anew.


After eleven days of plasmapheresis (and over 40 units of blood), we opted to have Skyler try a course of Soliris as a new treatment avenue to explore. Within 48 hours of the first IV dose of Soliris, lab tests indicated hemolysis (red blood cell destruction) was halted and Skyler's labs steadily improved. Skyler received Soliris once every 2 weeks from April 2009 until May 2010 (we discontinued Soliris after over a years' worth of great labs).   Even after a winter filled with classroom exposure to the usual coughs and colds, Skyler's lab tests show no sign of disease activity or the devestation that aHUS wreaks on the body. As Skyler was supposedly the 3rd aHUS patient in the world to experiment with Soliris (currently undergoing trials to earn FDA approval for aHUS patients), we are not sure how long Skyler's body can maintain this current state of excellent health - yet we are most grateful for this respite from aHUS, and know that we will chose to promptly restart Soliris therapy if lab values indicate aHUS activity..
Skyler celebrated his 7th birthday on June 28th, 2011 and has already lost several baby teeth! It also seems like just yesterday that the Tooth Fairy was paying a visit to Hunter. While our whole family misses him terribly, I believe I can best honor Hunter's memory by celebrating the warmth and joy he brought to our world. As for Skyler, our current plan is to keep enjoying his miraculous wellness, allowing Skyler to spend quality time doing important little boy work - like tossing stones into the mirrored beauty of an ocean ruffled by a crisp, fresh breeze.

Update July 2015:  Skyler has just celebrated his 11th birthday and continues to enjoy an active life.   Bright, engaging, a growing like a weed, Skyler maintains good lab values and health with no apparent aHUS activity.

 

Linda Burke:  Founder of www.atypicalhus.org , the interactive site of

 The Atypical HUS Foundation

 

Creator of Patient and Caregiver Resources (see tabs on this site)

RareConnect Moderator – RareConnect aHUS Community

aHUS Alliance – Volunteer, Global aHUS Advocacy and Social Media

 

NOTE:  Until Dec. 2015, Linda Greene Burke served as this site's webmaster.  Steve Greene (ALPHA Marketing) created this interactive aHUS networking communication hub in honor of his nephew, Hunter B. Burke (2002-2008).   From its inception in 2009 until Dec. 2015, this network was sponsored by these two families and donated to The Atypical HUS Foundation to aid the nonprofit's mission for support and outreach to aHUS patients, caregivers, and families.

At the end of December 2015, all assets created and maintained by the Greene and Burke families have been fully and freely donated to The Atypical HUS Foundation, with all rights and responsibilities.  Linda Burke continues to volunteer with multiple efforts and groups that support aHUS patients, families, and issues.  She remains a moderator of the global aHUS webpage at www.RareConnect.org and is an active participant with the aHUS Alliance. to include writing on aHUS global topics for the aHUS Alliance website.

Contact Linda Burke

E:  linda@aHUSallianceAction.org

On Twitter with aHUS global News & Insights at:  @aHUSAmerica

 

 

* Keeping a Positive Attitude:  Living with a Diagnosis of aHUS

http://www.atypicalhus.org/profiles/blogs/charmed-moments

 

* Recognizing Challenges:

http://www.atypicalhus.org/profiles/blogs/the-broken-window

 

* Creative Problem-Solving   (appropriate for aHUS and all of Life's Challenges)

Poem:  My Autobiography in 5 Short Chapters by Portia Nelson

http://www.panhala.net/Archive/Autobiography.html

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Linda Burke's Blog

aHUS Awareness Day 2016 - Info & Resources

2016 aHUS Awareness Day - 24 September

Information & Resources

     The aHUS Alliance, an international group of atypical HUS patient organizations, has announced its 2nd annual global aHUS Awareness Day campaign will occur on 24 September 2016, dedicated to sharing information and insights into the extremely rare disease…

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Posted on August 29, 2016 at 10:00am

aHUS Awareness Day - 24 Sept 2016

     24 September 2016 will mark the 2nd annual world aHUS Awareness Day.  Patient organizations from around the world, in collaboration as the aHUS Alliance, have issued a press release providing details within an PRNnewswire,

From the 2016 August 24 Press Release:

"The aHUS Alliance invites all stakeholders to join together to promote visibility and to highlight insights and…

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Posted on August 24, 2016 at 7:50am

aHUS Global Site launches at www.ahusallianceaction.org

     The aHUS Alliance of patient organizations announced on 28 May 2016 the launch of an aHUS global website that will connect, inform and and encourage collaboration among stakeholders within the global aHUS community, for the benefit of all those affected by aHUS.   Visit www.ahusallianceaction.org to view this portal of worldwide aHUS connectivity.

     While national aHUS advocacy groups remain paramount for…

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Posted on June 6, 2016 at 3:04pm

24 September 2016 is international aHUS Awareness Day.

24 September 2016 is international aHUS Awareness Day.

     This week the aHUS Alliance has announced the theme for the 2016 aHUS Awareness Day as 'Rising above aHUS', with an advocacy campaign symbol of a red balloon to unite messages worldwide.  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…

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Posted on May 31, 2016 at 9:34am

aHUS POLL WEBINAR - 21 JUNE 2016

     The aHUS Alliance is pleased to announce that RareConnect will offer a webinar on 21 June at 11 am EST, with aHUS expert Dr. Christoph Licht to present analysis of the 2016 aHUS survey results. The aHUS global survey closed 15 April with 233 responses from 23 countries, responding in 6 languages.

Register here: …

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Posted on May 21, 2016 at 1:17am

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Comment Wall (168 comments)

You need to be a member of The Atypical HUS Foundation to add comments!

Join The Atypical HUS Foundation

At 11:23am on June 28, 2017, Emily Hermann said…

Thank you Linda!

At 1:23pm on April 14, 2017, Ashley Thomas said…

Thanks for the warm welcome, Linda!

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
 
 
 

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.

************************

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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