The Foundation for Children with Atypical HUS

Teresa G. Craig
  • Female
  • Oakland, ME
  • United States
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Teresa G. Craig's Friends

  • Aida Billingsley
  • Cassie
  • Stephen Bradford Burke
 

Teresa G. Craig's Page

Latest Activity

Teresa G. Craig commented on Heather Still's photo
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Kayla and Ryan

"Hi! I'm Linda Burke's sister, Terry. This photo is priceless! Hope you are using it as a Christmas card! It certainly touches my heart with memories of my boys, Gary Jr. and Colby (now young adults in college) as they participated in band…"
Dec 13, 2009
Teresa G. Craig commented on Sara Palmer's blog post My Son Jack is 9 Today - 6 November 2009
"My heart goes out to you! Hunter and Skyler's Auntie Terry."
Nov 8, 2009
Aida Billingsley and Teresa G. Craig are now friends
Oct 23, 2009
Teresa G. Craig left a comment for Aida Billingsley
"Hi. Yes. Linda is a special sister. Shhh! She's just a tad younger than I, so I've played all of the big sister tricks on her. I was very close to my nephew, Hunter. Linda made sure that he was a big part of our lives, and he touched our…"
Oct 23, 2009
Aida Billingsley left a comment for Teresa G. Craig
"Hi Teresa! thank you. It is nice talking to you, Linda is such an amazing and strong person. She truly inspires me as we go through this journey. I am really glad we had the opportunity to attend the conference. It was really great learning new…"
Oct 23, 2009
Teresa G. Craig left a comment for Aida Billingsley
"Hi Aida! Welcome to the site! It is a wonderful place to gain information and support, make friends, raise awareness and work toward a cure for aHUS. Glad that you had the opportunity to attend the conference. Much discussion on this should be…"
Oct 18, 2009
Teresa G. Craig left a comment for Beat and Ruth Schenk
"Welcome Beat and Ruth! I live in Oakland, Maine, and my sister, Linda Burke and husband Brad of Cape Elizabeth, Maine are parents of my nephews. We lost my nephew Hunter, pictured with me here, to the disease. Hunter was a blessing to our family.…"
Oct 18, 2009
Teresa G. Craig commented on Stephen Bradford Burke's photo
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Hunter on CBL 2008

"Love this photo of Hunter."
Oct 4, 2009
Teresa G. Craig replied to Christy's discussion Prayers
"I remember well my nephews being diagnosed. I am lifting this family and the doctors up to the Lord in prayer. Terry Craig "
Sep 29, 2009
Cheryl Biermann commented on Teresa G. Craig's photo
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Skyler

"Teresa, Hey, thanks for the info., it looks like y'all had a great time! It was such a cute picture."
Sep 28, 2009
Teresa G. Craig commented on Teresa G. Craig's photo
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Skyler

"Hi Cheryl. Yes! Skyler is riding a train at the Skowhegan Fair in Maine on a hot and sunny August day. Highlights included feeding the giraffes (While feeding goats, Skyler lost food...and the paper cup too! Yikes!), merry go round, pony ride,…"
Sep 28, 2009
Cheryl Biermann commented on Teresa G. Craig's photo
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Skyler

"What's Skyler doin in this pic? Looks like a train in a park."
Sep 28, 2009
Teresa G. Craig posted a photo
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Skyler

Sep 27, 2009
3 Comments
Teresa G. Craig commented on Cassie's blog post No Title
"Bless you, little Evan and your family. While at the hospital, there can be some fun things to do to make the visit more pleasant. At the Barbara Bush Children's Hospital in Portland, Maine, our family enjoyed the fish tank, cars to ride the…"
Sep 12, 2009
Teresa G. Craig commented on Stephen Bradford Burke's photo
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Playground Block

"Very nice, Brad. I believe that today is the day that all of Maine's lighthouses are open to the public."
Sep 12, 2009
Teresa G. Craig left a comment for Stephen Bradford Burke
"Hi Brad. It was great seeing you, Linda and Skyler on Sunday. Such a beautiful day! I don't have any instructions for you, but I see that Linda does. Love, Terry."
Sep 8, 2009

Profile Information

Birthday
May 27
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

Teresa G. Craig's Photos

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Comment Wall (3 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 12:02pm on October 23, 2009, Aida Billingsley said…
Hi Teresa! thank you. It is nice talking to you, Linda is such an amazing and strong person. She truly inspires me as we go through this journey. I am really glad we had the opportunity to attend the conference. It was really great learning new information and meeting some of the parents who battle with the same disease. I am so sorry for your loss, I can not even begin to imagine what your family has gone through, He was a beautiful boy! we will keep skyler and your family in our prayers. I look forward to talking with you in the near future, take care Teresa.
At 8:32pm on August 5, 2009, Stephen Bradford Burke said…
Terry,
I love those pictures of you and Hunter, I've never seen them. Thanks for sharing.
At 1:32pm on July 26, 2009, Linda Burke said…
Hi Terry,
Love the photos! I'll be happy to have you increase aHUS awarenesss with the aHUS "business cards" - one side has this interactive website URL and the other includes the informational site whose URL is www.atypicalhus.50megs.com . We appreciate your many years of support and participation, and extend a warm welcome to this interactive website.
 
 
 

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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