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   See All Stories

  The Faces of GT:

     Tooba's Story

Hey to u all... I am Rubab Asif from Pakistan n I just joined this forum. My sister Tooba is a GT patient.

    Peter's Story
Peter was born on April 13th 1992. He was pretty bruised up after birth - he was a large baby and was delivered with forceps.

    Quinn's Story
My son Quinn was born with Glanzmann’s Thombasthenia (GT). About 24 hours after he was born...

 Gretchen's Story
Hello,
My name is Gretchen, mother of four beautiful children, two of whom have GT.

    Alicia & Julia's Story
Two of 3 daughters in Oregon, USA. News on Alicia's bone marrow transplant...

    Maromeh's Story
My name is Maram Abu Goura. I am a 29 years old female from Jordan and I was diagnosed with GT since I was 5 months old.

     Julia's Story
Helen Smith never thought she'd champion a cause until her daughter, Julia, was born.

    Daniel, Eliza &
    Luke's Story
Our three children, Daniel 6 years, Eliza 2 years and Luke 9 months, all have Glanzmann's.

     Emily's Story
Emily is a typical 14 year old with Glanzmann’s Thrombasthenia (GT). She leads a very busy life, loves to hang out

    Jyll's Story
Hi, my name is Jyll. I’m so glad to have found this website. I’m not alone anymore.

    Kaytee's Story
My story
is taken from a couple of e-mails that I sent to Helen in August, 2001 through the Internet.
 

    Daniel's Story
My name is Roger. My wife's name is Kay. We have two children. Daniel is 12, and Sarah is 9. Only Daniel has Glanzmann's.

    David's Story
He was diagnosed at five months old after a week of tests in a local hospital. He presented signs of petechiae...

    Brandon's Story
Brandon, now 2 years and 6 months old, was diagnosed with GT when he was 4 months old.

    Sherry's Story
I am a 41 yr. old white female with GT bleeding disorder. I have never known anyone with this but me...

     Rebecca's Story
 Hi, My name is Rebecca and I live in MA, USA. I I was diagnosed with GT when I was a child. I am cur-rently 14 years old.

    Chase's Story
Chase, born April 25th 2006 - has had a very hard life so far. Beautiful baby boy-so sweet.

    Wyatt's Story
Wyatt was diagnosed with GT in September 2005, at 1 1/2. He he has had a rough time of it. He is a very happy and otherwise healthy boy.

    Maja & Karen's Story

Maja and Karin Grape were born the 28th of April 1995 in Ístersund
Sweden.


    Denise's Story
One day I was on the internet and I came upon the GT web site. For the first time in my life I saw other people just like ME!

    Isaac's Story
My name is Isaac Newman. I am 21 years old, and was diagnosed with GT (what a cool abbreviation...

    Cass & Kari's Story
Cassidy was born in 1980. She had a bruise on her chest My parents took her to the hospital and they were immediately accused of child abuse...

    Fani's Story
When I first came upon this website I cried. All these years I was alone in my battles with the GT...

    Trevor's Story

I was reading your web site and thought I would drop you a line all the way from Sydney, Australia. I was diagnosed with GT back in the mid 70’s...


    Calista's Story
Hi, I am a Can-adian mother of a three year old daughter, diag-nosed with GT. I was so happy to find this website. I know now, that we are not alone.

    Heather's Story
First I wanted to thank you for your wonderful website. Whenever I am having an emot-ional moment I always go to the site to get inspiration.

    Janice's Story
Congratulations on your new website! I have been searching for other people with Glanzmann's my whole life...

    Lisa's Story
My name is Lisa, i am 35 yrs old, born in ohio and was diagnosed with glanzmanns at age 13.

    Zhang's Story
Now, through this website, I can find some persons to talk with about GT so that I am less lonely.

    Valentin's Story
You have seen what it means to live with a baby with Glanzmann, the whole family worrying and frightened...

    Kali's Story
The doctor's had told us that one in 4 of our children might have this bleeding disorder.

    Eva's Story
I was diagnosed with GT when I was 7, when doctors suspected that I had leukemia. I am now 32 and this is my story.

    Hobbes's Story
We have two boys Calvin and Hobbes (name changed to protect their privacy).

    Charlotte's Story
My name is Charlotte A. (Rokke) Wright and I was buried on my 62nd birthday near my hometown of Belmond, IA.

    Dan's Story
I was diagnosed at three months of age with GT. I have three sisters and one brother, none of whom have GT, thank God!

    Debbie's Story
When I was born my mom says that she instantly knew I had GT because my older sister also has GT...

    Yang's Story
Two of my 8 children were diagnosed with this disorder at age 2 . This is when my nightmare begin...



                     Julia & Helen Smith
          Photo by Donna Borden @ www.egfotos.com
My name is Helen Smith and I founded the Glanzmann’s Research Foundation, a 501(c)3 organization in 2001 after learning about the research being done at the Medical College of Wisconsin by Dr. David Wilcox. Dr. Wilcox’s work showed great promise in finding a cure for Glanzmann’s Thrombasthenia (GT). Once I’d learned from him that no amount of research money was too small, I immediately started raising money to assist him with his research efforts. To date, over $200,000 has been donated by the Glanzmann’s Research Foundation. (more)


Lucy Adams, syndicated newspaper columnist and author, specializing in family humor and Southern humor has a new book out - "Tuck Your Skirt in Your Panties and Run". One of the stories included in the book is called "Mrs. Smith Goes to Washington". Click the link to hear the story. Visit Lucy's website here.




The National Organization for Rare Disorders (NORD) is redesigning their website and will soon be featuring Helen and Julia in a rotating 'carousel' of photos on the front page. Click below to see the entire .PDF file, images of how the site will look when it is launched.

                      Click here to see the entire .PDF document.


 

Dinner for a Cure Casino Night
Saturday, March 1, 2008   6:00 - 11:00


The night was a wonderful success!! To our sponsors, our contributors and our
volunteers, and to everyone who was involved, a warm and heart-felt thank you.
We truly could not have done it without you.
Pictures of the Friday night dinner are here
And pictures of the Casino Night are here



Click here to see TV interview.
Julia can say, "I just met President Bush at the White House!"

Just like any other third grader, Julia Smith spends part of the afternoon in the kitchen finishing her homework.

But, her class-mates at Augusta Prep won't be able to compete during show and tell next week.

Read More...


Living with GT
Learn to be safe and LIVE WELL

Please send in your stories and/or pictures of you living your life to the fullest so that we can update your story on our 'Stories' page. My email address is Helen@Glanzmanns.Com. If you don't already have a story on the page, I would very much like to include you in this important section of the website. The 'Stories' page is one of the first places anyone new to this site will visit and it's important, especially for new GT parents to read of our successes in addition to some of our more challenging times that are unique to GT!


Quinn                            

Thank you for making this GT community a truly rare community in more ways than the obvious one!

Helen Smith
Glanzmann's Research Foundation
www.CureGT.com

 

 



Dinner for a Cure Casino Night
Sacred Heart, Cultural Arts Center
March 10, 2007    6:00 - 11:00
Was a wonderful success!

David, Gretchen, Tito, Randy, Jyll, Aidana, Chris, Julia, Emily, Dan, KayTee, Bettie, Steve

To our sponsors, our contributors and our volunteers, and to everyone who was involved,
a warm and heart-felt thank you. We truly could not have done it without you.
Pictures of the Friday night dinner are here
And pictures of the Casino Night are here

The GT website has created the opportunity for people with GT from all over the world to not only get vital information from other GT patients but to actually FIND someone else with GT. The website has inspired people to travel thousands of miles to Augusta just so they can meet other GT patients in person for the first time in their lives. They also come to Augusta to meet the man who brings them hope.

Dr. David Wilcox attends our event annually to keep us abreast on his research progress. He demonstrates his accomplishments in the lab and reports how he has applied our previous donations, and explains how he plans to utilize future contributions in his pursuit of finding a cure for Glanzmann's Thrombasthenia. Dr. Wilcox also enjoys the opportunity to meet the very people his hard work and dedication will affect.


An Article from the Journal of Thrombosis and Haemostasis

Prophylactic and therapeutic recombinant factor VIIa
administration to patients with Glanzmann’s thrombasthenia:
results of an international survey

Antibodies to glycoprotein (GP) IIb-IIIa and/or HLA may render platelet transfusions ineffective to stop bleeding or to cover surgery in patients with Glanzmann’s thrombasthenia (GT). Anecdotal reports suggest recombinant factor (rF)VIIa might be a therapeutic alternative in these situations. Objectives: An international survey was conducted to evaluate further the efficacy and safety of rFVIIa in GT patients. Patients: We analyzed the use of rFVIIa during 34 surgical/invasive procedures and 108 bleeding episodes in 59 GT patients including 29 with current or previous antiplatelet antibodies, and 23 with a history of refractoriness to platelet transfusion.          (read more...)


New Products to Help
Stop Bleeding Quickly

By LAURA JOHANNES
July 3, 2007; Page D6

New advances in technologies that stem bleeding have been saving lives in emergency rooms and the war in Iraq. Now similar advances are being used in consumer products that treat bleeding, including powders, bandages and nose plugs. The makers of these products say they help stanch bleeding from cuts, nosebleeds and more-serious wounds. Doctors say many of the products promote clotting, but caution that deep cuts, or those where tendons are damaged, still require medical attention.      read more...


Mom starts nonprofit to fight disease
By Charmain Z. Brackett
Correspondent

Helen Smith never thought she'd champion a cause until her daughter, Julia, was born.

Julia, 7, has a rare blood disorder called Glanzmann's thrombasthenia. Mrs. Smith, through the Glanzmann's Research Foundation, a nonprofit organization she founded, helps raise money for research to find a cure.

"The year she was born, there were only 200 reported cases" of the disease, said Smith, whose organization will be the beneficiary of a fundraising dinner at the National Science Center's Fort Discovery in March. The event will feature a silent auction with items such as a celebrity hunting weekend.

Julia was diagnosed with the disease when she was about 6 months old.

There were some complications when Julia was born, and she spent the first two weeks of her life in intensive care.                        more




Daily tomato juice eases diabetic symptoms

20/08/2004 - Drinking tomato juice everday reduced the blood’s clotting ability in people with type 2 diabetes, report Australian researchers this week, reports Dominique Patton.

They found significant lowering of platelet aggregation – the blood's ability to clot – after a daily dose of juice for three weeks, according to the research letter in this week's JAMA (Aug 18;292(7):805-6).            (read more)



The effectiveness of web-based translators varies from source to source. A list of some of the more popular language translators can be found here. For an example of this page translated into Spanish, click here. 


Peripartum management of a patient with Glanzmann’s thrombasthenia using Thrombelastograph®

S. Monte* and G. Lyons
Department of Obstetric Anaesthesia, St James’ University Hospital, Beckett Street, Leeds LS9 7TF, UK*Corresponding author
Accepted for publication: January 7, 2002

We describe the perioperative management of a 31-yr-old primipara with Glanzmann’s thrombasthenia, who required urgent Caesarean delivery at 33 weeks’ gestation. Peripartum haemorrhage was inevitable and was pre-empted by transfusion of multiple blood products, the effects of which were monitored by Thrombelastograph®. The blood products given are discussed.                  (read more)



Sustained Engraftment Post Bone Marrow Transplant Despite Anti-Platelet Antibodies in Glanzmann Thrombasthenia

Background. Patients with Glanzmann thrombasthenia (GT) have normal platelet counts but abnormal platelet aggregation and carry the risk of life-threatening bleeding. We report three patients who received bone marrow transplantation...    (read more)


Ms. Helen Smith
Glanzmann's Research Foundation
Augusta, GA 30907

Dear Ms. Smith:

On behalf of the Department of Pediatrics and the children we serve, I want to thank you and the Glanzmann's Research Foundation for your generous donation...  (read more)



         Peter Zdziarski           Read Peter's story here.
I wanted to brag a little about Peter - he participated in his first triathlon on Sunday in a relay team with his aunt and uncle (Peter swam, uncle biked, aunt ran). He did a 1/2 mile open swim in a lake and placed 14th out of 92 swimmers! His time was 15 minutes and 45 seconds. He was actually the 2nd youngest swimmer in the water that day! His relay team placed 7th out of 20 relay teams and 4th in their division. I have a great picture of him getting out of the water I'm hoping to post soon.

I know some parents with young GT children focus on the sports their children will not be able to particpate in. If you focus on the amazing sports your kids can participate in and encourage them - the sky is the limit!

Take care -
Missy


Monitoring survival and function of transfused platelets in Glanzmann thrombasthenia by flow cytometry and thrombelastography

C. Male, D. Koren, B. Eichelberger, K. Kaufmann & S. Panzer
Department for Pediatrics, and Clinic for Blood Group Serology, Medical University Vienna, Austria

Patients with Glanzmann thrombasthenia (GT) may form isoantibodies which induce
refractoriness or inhibition of function of transfused platelets. We monitored the
survival and function of transfused platelets by flow cytometry and thrombelastography
in a patient with GT. Gating on CD42a + allowed identification of even a few transfused platelets. Only by gating on these CD41 + CD42a + cells were we able to demonstrate their capability to bind fibrinogen and PAC-1 upon activation.       (read more)


The Seafood Bandage
A new powder made from shrimp stops serious bleeding—fast

Popular Science Magazine Staff Writer - Monica Khemsurov | July 2006


Launch the slideshow to learn how the seafood bandage works.

When it comes to war wounds, red is dead. Stop the bleeding, and you save the soldier. It’s a simple idea that’s driving a budding industry for fast-acting blood-clotting agents.

The latest in the category: a pourable bandage called Celox. Made by SAM Medical Products near Portland, Oregon, Celox is a granular compound derived from shrimp shells. “It resembles uncooked grits,” says Adrian Polliack, SAM’s head of research and development. When poured directly into a bleeding wound and subjected to pressure, the positively charged Celox granules cross-link with negatively charged red blood cells, forming a putty-like plug that blocks blood flow [see slideshow].

The process takes about five minutes and features key advantages over two kinds of high-tech bandages now in use in Iraq and Afghanistan. Unlike HemCon, a bandage also made of shrimp shells that works only on surface injuries, Celox can be poured into major wounds. QuickClot, a clotting aid made of mineral powder, is similarly applied but creates heat that can cause severe burns.

Celox could hit war zones by year’s end, pending approval by the Food and Drug Administration. After that, your first-aid kit.



The National Science Center's
Fort Discovery

'Discover a Cure'
Fund Raising Dinner Was A Huge Success!!
Our Heartfelt Thanks To Everyone Involved.


Click Here For Photos.
Click here for photos of fund raising dinner.



Thromboembolic Adverse Events After Use of Recombinant Human Coagulation Factor VIIa

Kathryn A. O’Connell, MD, PhD; Jennifer J. Wood, PhD, MPH; Robert P. Wise, MD, MPH; Jay N. Lozier, MD, PhD; M. Miles Braun, MD, MPH

JAMA. 2006;295:293-298.

Context The US Food and Drug Administration (FDA) licensed recombinant human coagulation factor VIIa (rFVIIa) on March 25, 1999, for bleeding in patients with hemophilia A or B and inhibitors to factors VIII or IX. Use in patients without hemophilia has been increasing since licensure.

Objective To review serious thromboembolic adverse events (AEs) reported to the FDA's Adverse Event Reporting System (AERS).     more


Blood, 15 October 2005, Vol. 106, No. 8, pp. 2596.

Blood Journal Home Page.

Viral rescue of murine
Glanzmann thrombasthenia

Jerry Ware
UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES

The platelet integrin receptor is central to the platelet's role in hemostasis and its absence results in the human bleeding disorder, Glanzmann thrombasthenia (GT). In this issue of Blood, Fang and colleagues describe ex vivo viral transduction of mouse hematopoietic stem cells and determine the in vivo efficiency required to rescue the GT phenotype in a mouse model of the disorder.      more


Preventing Iron Deficiency Anemia

Iron deficiency is still a big problem today. In fact, the World Health Organization lists iron deficiency as one of the 'Top Ten Risk Factors Contributing to Death'. more



Dow Jones Business News
Novo Nordisk Says EU OKs NovoSeven For Two New Treatments
Thursday February 19, 7:49 am ET
COPENHAGEN - Danish pharmaceuticals company Novo Nordisk A/S said Thursday the European Commission has approved NovoSeven for two new treatments. NovoSeven (Eptacog alfa (activated)) was approved for the control of bleeding in patients with factor VII deficiency and Glanzmanns thrombasthenia refractory to platelet transfusions.  more
November 24, 2003
British Journal Recommends Immunization for Patients with Bleeding Disorders

The British journal Haemophilia outlined investigators' recommendations appropriate for patients with bleeding disorders, saying..." more


Glanzmanns Thrombasthenia (GT) is caused by a deficiency of a protein on the surface of the platelet, called Glycoprotein IIb/IIIa. As a result, platelets fail to form a plug at the site of an injury. more
Research Is being done by various organizations. Because of the rarity of the disease, funds for research are rare also. more
Stories about people with GT:
At first glance, Julia Smith's curly golden hair, huge blue eyes and Cupid's bow lips bring to mind a life-size porcelain doll. But the bruises that dot the 2-year-old's body from head to toe tell a different story. Julia was born with a rare, incurable bleeding disorder called Glanzmann's thrombasthenia.

more stories          more about Julia

The Message Board is place to communicate and share ideas. Please be sure to register and log in to the board. more
Fund Raisers are put on by a variety of people. They have been very helpful in raising money and gaining community awareness. more
Submit pictures, stories & contacts to Helen Smith. See the contact page.

This is a non profit website. The goal of this site is to provide the general public, parents, loved ones, and the medical community with accurate information. All information is taken from sources believed to be reliable. No treatment of GT should be undertaken without medical supervision. Donations should be made to the Glanzmann's Research Foundation.
All donations are tax deductible
.

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