| The
Faces of GT: |
| Muhammad's
Story
|
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 |
 |
Daniel
has participated in a one week bleeding disorder camp at Camp Courage-North
every other year since he was 7 years old. |
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 Östersund
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 emo-tional moment I always go to the site to get inspiration. |
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. (Read more) |
CLINICAL
TRIALS HAVE BEGUN!
If you would like to participate, read
more here.
| The
Jefferson Awards speech, June 15th, 2008 in Washington
D.C. |
 |
|
|
| "On
a bright spring morning when she was 7 months old I walked into my
daughter’s bedroom and experienced every mother’s nightmare…
My
baby was whimpering, she was covered in blood from head to toe,
her arms, legs, chest, diaper, and sheets were all saturated in
blood. Her hair was matted with blood, her eyelids were sealed shut
with dried blood, even her mouth was filled with blood. It was a
scene from a nightmare or a horror movie; something straight out
of a Stephen King novel, only this was real…"
(Read
the rest of the Jefferson Award speech)
|
|
NATIONAL
Glanzmann’s
Thrombasthenia
Awareness Day!
March 1st has been declared by the Senate to be the
National GT Awareness Day.
Senate Resolution 471.
House Resolution 994
has now passed
the House of Representatives!
|
|
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
|
| |
|

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... |
Preschool
children have the highest rate of head injury, and among infants
under one year these injuries accounted for 40 % of the total
injuries treated in emergency rooms.
Read
more about ThudGuard |
|
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! |
|
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. Read
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) |
| 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. |

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). Read
more |
Blood,
15 October 2005, Vol. 106, No. 8, pp. 2596. 
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. Read
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'. Read 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. |
|