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 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.
NATIONAL
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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 |
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Julia visits George W. (Photos) 2 Columbia Times Articles  Mrs Smith Goes To Washington & Foundation Arranges a Meeting With Bush |
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 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. |
Learn to be safe and LIVE WELL
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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 surveyAntibodies 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
CorrespondentHelen 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 symptoms20/08/2004 - 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, 2002We 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 ThrombastheniaBackground. 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 30907Dear 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, AustriaPatients 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.
Fort Discovery
'Discover a Cure'
Fund Raising Dinner Was A Huge Success!!
Our Heartfelt Thanks To Everyone Involved.
Click Here For Photos.
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, MPHJAMA. 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.
Viral rescue of murine
Glanzmann thrombasthenia
Jerry Ware
UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCESThe 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 AnemiaIron 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 DisordersThe 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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