Lisa L. Brown Female Augusta, ME United States: Share on Facebook Share Twitter

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Lisa L. Brown commented on Steve Greene's video

Hunter Burke Slideshow: Turn up speakers!

"Every time I watch this, I think, why couldn't they have had something that worked for Hunter? He was such a cute little boy, clearly full of wonder. My hope is that a cure will be found, sooner, rather than later."

Feb 29

Lisa L. Brown left a comment for Linda Burke

"Linda, What a wonderful way to honor Hunter and to help those affected by the earthquake. It appears that this site is getting much attention and I can see it is helpful to so many. Sending hugs to you, Brad, and Skyler. Lisa"

Feb 22, 2010

Linda Burke left a comment for Lisa L. Brown

"Hi Lisa, The Sea Hunter, Greg Brook's treasure searching vessel (Subsea Research LLC), recently left Portland, Maine bound for Haiti with 4 large cardboard boxes of Hunter's unused medical supplies. We sent along 2 automatic and 2 manual…"

Feb 22, 2010

Lisa L. Brown left a comment for Linda Burke

"Linda, I hope things are going well. I got the information about the money raised and noticed the pictures of Skyler, what a cutie, like his brother. How is Skyler doing overall. I hope all is well. Lisa"

Feb 5, 2010

Lisa L. Brown left a comment for Linda Burke

"Hi Linda, i am not sure, it seem odd it would just change like that. Maybe i need to try it on my home puter and see what happens. i actually got an apology from my boss yesterday regarding really letting me down, so will have a new supervisor, not…"

Oct 29, 2009

Linda Burke left a comment for Lisa L. Brown

"Hi Lisa, I just checked again- the video my brother Steve made "Hunter Burke Slideshow: Turn up Speakers!" remains functional from my home computer. As you wondered, your viewing may very well be halted by protective functions if…"

Oct 28, 2009

Lisa L. Brown commented on Steve Greene's video

Hunter Burke Slideshow: Turn up speakers!

"I keep trying to watch Hunter's video. Is it "down" or something. I have not been able to get it to work for weeks. So, I am not sure if it my computer, or something else. It is nice to see that families have this nice connection.…"

Oct 28, 2009

Lisa L. Brown updated their profile photo

Sep 23, 2009

Lisa L. Brown and Svetlana Finley are now friends

Sep 18, 2009

Lisa L. Brown commented on Steve Greene's video

Hunter Burke Slideshow: Turn up speakers!

"For some reason I cannot get the video of Hunter to come up, my work computer is acting a bit "off" but I wanted to watch it again. Lisa Brown"

Sep 18, 2009

Lisa L. Brown and Cassie are now friends

Sep 14, 2009

Lisa L. Brown left a comment for Steve Greene

"Steve, Thank you for letting me know. And thank you for your appreciation, I wish I could have done more and I truly hope that Skylar does well on this new medication. I keep a picture of Hunter next to my desk which I look at all the time. I…"

Aug 24, 2009

Steve Greene left a comment for Lisa L. Brown

"Hey Lisa, yep on both counts (uncle and brother) :)"

Aug 21, 2009

Lisa L. Brown left a comment for Steve Greene

"Steve, I am guessing you are an uncle? Linda's brother perhaps? I so enjoyed helping the family, I wish I could have done more to help. Mine is a unique job, helping families whose children are sometimes very ill. And while I rarely get to…"

Jul 28, 2009

Profile Information

Birthday: December 29

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 child ( or myself as a patient) is best described as:: Question Does Not Apply To My Situation

Comment Wall (6 comments)

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

Join The Foundation for Children with Atypical HUS

At 12:11am on February 22, 2010, Linda Burke said…: Hi Lisa,
The Sea Hunter, Greg Brook's treasure searching vessel (Subsea Research LLC), recently left Portland, Maine bound for Haiti with 4 large cardboard boxes of Hunter's unused medical supplies. We sent along 2 automatic and 2 manual blood pressure machines (with both infant and toddler cuffs), a feeding pump and case of bags, an IV pole, clamps, tons of syringes, sterile gloves, etc. We applaud these Mainers' can-do attitude, and were glad to support their humanitiarian mission. We wish all who sail on the Sea Hunter a safe journey - God bless those who need aid and those who offer hope and assistance.

At 1:31pm on October 28, 2009, Linda Burke said…: Hi Lisa,
I just checked again- the video my brother Steve made "Hunter Burke Slideshow: Turn up Speakers!" remains functional from my home computer. As you wondered, your viewing may very well be halted by protective functions if you're checking from a secure computer network (like your profile photo issue). Hope all is well at your end!

At 9:51pm on August 21, 2009, Steve Greene said…: Hey Lisa, yep on both counts (uncle and brother) :)

At 10:20am on July 28, 2009, Steve Greene said…: Lisa, just a quick note to say thanks for all the support you've given our family over the years. You were truly a Godsend for Hunter. Best, Steve

At 5:34pm on July 23, 2009, lisa ann peterson said…: i dont know where to even go for katie beckett i have never heard of it we still are waiting for a hearing for ssi they say chloe is disabled but not enough and they say that this isnt going to last for more than a year i tried to explain to them that she has a genetic disorder we even had the doc write a letter explaining chloes condition it has been areal hassle... i wish things were a litle more simple..

At 12:31pm on July 22, 2009, Linda Burke said…: Hi Lisa,
Thanks for joining us on the newly launched interactive website for the Foundation for Children with Atypical HUS. The Burke family has always appreciated your kind words and assistance over the years with Hunter - can't thank you enough for lighting our path through this maze called aHUS. Best, Linda

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Welcome to
The Foundation for Children with Atypical HUS

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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...

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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