Foundation News & Updates

We have exciting news! With Rare Disease Day and GT Awareness Day right around the corner, The Glanzmann’s Research Foundation is launching a dedicated blog section on our website, and we need YOU to be a part of it! This new space will be a platform for individuals living with Glanzmann thrombasthenia to share their…

Living with a rare disease like Glanzmann Thrombasthenia (GT) can feel isolating, but it doesn’t have to be. Finding a supportive community can make all the difference in navigating the challenges of this condition. At the Glanzmann’s Research Foundation (GRF), we know that connection, shared experiences, and support are vital in improving quality of life….

Every year, Rare Disease Day (February 28) and Glanzmann Thrombasthenia Awareness Day (March 1) provide an opportunity to shine a light on conditions that often go unnoticed. With over 300 million people worldwide living with a rare disease, awareness is the first step toward progress—whether it’s in research, treatment, or support for those affected. One…

Make a Difference in the Lives of Those with Glanzmann Thrombasthenia Giving Tuesday is a day for generosity, community, and hope. At the Glanzmann’s Research Foundation (GRF), we’re committed to advancing research for a cure for Glanzmann Thrombasthenia (GT), a rare and challenging bleeding disorder. With your support, we can continue funding groundbreaking research and…

We’re honored to announce that we’ve been selected as a 2024 RAREis Global Advocate Grant recipient by Amgen’s RAREis program. This recognition underscores our unwavering commitment to the Glanzmann Thrombasthenia community and the rare disease community at large, who inspire us every day with their strength and resilience amid care and research barriers. With this…

Cian O’Sullivan tells Sarah Horgan about the blood disorder affecting his children, the judgment of strangers when they see the resultant bruises, and the respite the family enjoys at Barretstown. A Cork father has opened up about how quick society is to judge as his children struggle to cope with an extremely rare blood disorder…

Glanzmann Thrombasthenia is a rare bleeding disorder characterized by the inability of blood to clot correctly due to a deficiency in platelet function. While managing this condition requires careful attention to various factors, including bleeding episodes and cardiovascular health, integrating physical activity into one’s lifestyle can improve overall well-being. Understanding Glanzmann Thrombasthenia Glanzmann Thrombasthenia poses…

In the latest episode of “Bruised Not Broken: Life with Glanzmann Thrombasthenia,” Melissa Zdziarski and guest Lauren Hurley share their heartfelt stories of navigating motherhood while affected by GT. Lauren, a GT patient from Massachusetts, recounts her lifelong battle with Glanzmann Thrombasthenia and her determination to become a mother through adoption. The episode explores the…

“We are currently making significant strides in our testing of the clinical vector, yielding promising results thus far. These efforts are crucial in generating the preliminary data necessary to pave the way for our application and subsequent approval of a clinical trial for gene therapy for Glanzmann Thrombasthenia (GT). Additionally, we are in the process…

In this podcast, host Taylor and guest Robie share a heartfelt conversation about Glanzmann Thrombasthenia, a rare genetic bleeding disorder. They discuss Robie’s journey, struggles, surgeries, and life lessons. The dialogue covers adapting to the disorder, family decisions, and not letting it limit one’s life. Want to Sponsor the Podcast? Contact Us Here Have GT?…

Taylor Burtz knew it was a leap of faith to fulfill a dream of her late mother, but she also knew it was a chance that had to be taken. “I’m still kind of in shock that the event happened. It’s very surreal,” said Burtz, the president of the Glanzmann’s Research Foundation, an organization her…

Last week, Kate and I hopped over the pond to attend the Glanzmann’s Research Foundation’s (GRF) first ever educational conference in Boston, USA. The conference was a momentous occasion for the Glanzmann’s community, inspired by the work of Helen Smith. Helen founded the GRF in 2001 following the diagnosis of her daughter Julia with Glanzmann Thrombasthenia…

Sabina Da Cunha, a 36-year-old mother with a post-graduation in chemistry and a career in Dubai, had everything under control. Her two children were living with her mother in Parra while she worked abroad. However, everything changed in 2019 when her son, Samuel, was diagnosed with Glanzmann Thrombasthenia at just one-year-old. This life-changing diagnosis compelled…

Please help us spread awareness, educate, and cure the ultra-rare bleeding disorder Glanzmann Thrombasthenia. Please donate at https://bit.ly/3KZs0QL

Picking up the torch her mother lit wasn’t what Taylor Burtz had planned for her life. But after Helen Proctor Smith died in October 2019, Burtz knew she and her sister, Julia, had to carry on her mother’s fight for a cure for a rare blood disease known as Glanzmann Thrombasthenia. “Me taking over was…

In this episode, we turn inward and speak with our very own Peter Zdziarski and Julia Smith. They allow us to take a glimpse into their lives growing up with Glanzmann Thrombasthenia by sharing their highs and lows throughout the years. These two jump outside of their comfort zones to encourage more people within the…

Last Saturday night, I frantically rushed to A&E with my four-year-old son Felix. He has a rare, life-threatening bleeding disorder called Glanzmann thrombasthenia. Felix’s condition means his blood has difficulty clotting, which results in spontaneous and life-threatening bleeds at any time, frequently from his nose and mouth. On a day-to-day basis, even a slight bump or scrape in…

On this official GRF Podcast, we focus on everything and anything Glanzmann Thrombasthenia. From treatments to community spotlights, experts, and of course, the most current updates on the cure. The GRF podcast is sure to have something of interest to the GT community. Please visit our website at curegt.org and consider donating to help us…

FOUR friends have helped a Trowbridge schoolboy raise more than £1,300 for the Wiltshire Air Ambulance by joining more than 150 people in a Rudolph and Santa Dash on Sunday. Oliver Brooking and four of his friends raised the cash in sponsorship as a thank you to the Wiltshire Air Ambulance charity for saving his…

Patrick shares life post-ankle surgery and wonders if everything from now on will be impacted by hemophilia. Plus, a fantastic interview with Hemophilia of Georgia‘s Director of Advocacy, Michelle Conde, AND members of. Glanzmann’s Research Foundation, Inc., Peter Z, and Taylor Anne. We’ll cap the episode with another Let’s Talk mental health segment on acknowledging…

PANAJI: Unexplained red and purple bruises began appearing on Jacob Fernandes’ (named changed) body when he was still a toddler. At age two, after several rounds of hospitals and laboratories, Jacob was diagnosed with the rarest of disorders, Glanzmann’s Thrombasthenia, which causes the patient to bleed easily, sometimes for days. Only 500 cases of Glanzmann’s…

Advocating for Health Equity and Patient-Centered Care Living with Glanzmann Thrombasthenia, an ultra-rare bleeding disorder, presents unique challenges. However, for Esmeralda Vásquez, it has become a driving force for advocacy. Her personal experience has fueled her passion for giving back, raising awareness, and amplifying the voices of those affected by rare blood and bleeding disorders….

Glanzmann’s Thrombasthenia is a rare disorder that causes Cheyenne’s body to bleed constantly. CLEVELAND COUNTY, N.C. (WBTV) – You never, ever know what anyone else might be facing. Please meet Cheyenne McNeilly, a rising seventh-grader at Burns Middle School in Cleveland County. She was born in 2010 in Shelby with a cone-shaped head and some…

A fun walk/run at Sauble Beach helped raise more than $6,000 for SickKids hospital Sunday morning. Article content The annual eight-kilometer Sauble Beach Chamber of Commerce event had about 60 participants. It has raised more than $40,000 in support of bleeding disorders over the last several years, said Dave Fretz one of the event’s organizers….

Glanzmann’s Thrombasthenia (GT) is a rare bleeding disorder, estimated to affect 1 in a million people. Compared to more “common” bleeding disorders such as hemophilia, GT receives a lot less attention when it comes to research and developments. Haemnet recently commenced the Glanzmann’s 360 Study which will explore the ways in which GT affects those…

It’s no secret that not all bleeding disorders are created equally. A huge amount of time, research effort, and funding have improved our understanding of the impact of hemophilia on those living with it. Over time this has resulted in the development of effective treatments. By contrast, a brief glance at the number of publications…

The last weekend of April 2022 was quite the weekend, to say the least. Board officers visited Dr. David Wilcox in his lab (the Kelly Weil Laboratory) at the Medical College of Wisconsin. The lab has been working for decades to make many advances in gene therapy including a specific type of gene therapy that…

Join us for Rare Across America this February and March to meet your new and re-elected legislators, share your story, and make rare diseases a priority in the 117th Congress. Haz clic aquí para obtener información en español y para registrarte. WHEN February 22 – March 5, 2021 (Virtual Congressional meetings on March 3rd and…

Wait how do you spell that? is a rare disease podcast produced by Patient Worthy. Patient Worthy talks about issues affecting people with rare and underdiagnosed conditions and interview advocates from across the community. In this episode, Colby speaks with our President Taylor Anne Burtz and Vice President Peter Zdziarski about their personal experiences with…

Hi everyone, and happy holidays! With cyber Monday upon us, here is a great and easy way to help donate funding for a cure for GT.   Sign in to smile.amazon.com on your desktop or mobile phone. From your desktop, go to Your Account and select the option to Change your Charity. Or, from your…

When her son was born with an extremely rare genetic condition, Annette Kellow 37, was devastated. But a strange coincidence is helping her through. I was chatting to my best friend, Irene, at our favorite nail salon when the technician accidentally nicked her skin, and her finger started to bleed. ‘I’ve paid to bleed,’ joked…

Patient Worthy has recently begun a partnership with the Glanzmann’s Research Foundation, a nonprofit patient organization dedicated to spreading awareness about Glanzmann’s thrombasthenia and finding a cure. We spoke with Vice President Peter Zdziarski about his involvement with the organization and how the foundation got to be where it is today. Peter is a patient…

Miao Miao, a four-year-old male domestic shorthair cat, was brought to the University of California, Davis veterinary hospital with persistent nosebleeds. Based on previous medical issues, his owners were aware that he had some variation of a blood platelet disorder, but the exact makeup of that was never discovered. Specialists with UC Davis’ internal medicine…

Introduction: Glanzmann thrombasthenia (GT) is a rare bleeding disorder (~1:1,000,000) caused by impaired function of platelet glycoprotein IIb/IIIa responsible for aggregation. This novel survey was designed to identify the burden of GT through better understanding of the management of the disorder and its psychosocial impact on patients and caregivers. Methods: Participants were recruited via a…

Little John Mary suffers from a rare hereditary disease: his platelets cannot stop bleeding. Siniscola (Nuoro) – A father’s love for his son is all in a simple photo: in the left pane, there are the legs of Giovanni Maria, a child who will turn 4 in October, while those portrayed on the right are…

Two of our GT patients have entered the 2020 Rare Artist Contest and need your votes for a chance to go to Rare Disease Week in Washington DC! Learn More About RareArtist.org Vote for Peter’s Art Vote for Cathy’s Art  

The Glanzmann’s Research Foundation (GRF), a 501(c)(3) nonprofit corporation, has a mission to increase awareness of Glanzmann’s Thrombasthenia, provide a network of support for families navigating a Glanzmann’s Thrombasthenia diagnosis, and to raise funds for a cure. We would like to formally address the increase in conferences, events, and programs that are being marketed towards…

Hi, If you are new to our community, welcome. If you are back after our brief internet hiatus, welcome back! I want to share a brief history for those of you just discovering our community. My mother, Helen Smith, founded the Glanzmann’s Research Foundation a few years after my little sister, Julia, was diagnosed. It…

Michigan doctors who used cured pork to stop a nosebleed won a 2014 Ig Nobel prize, awarded by the Annals of Improbable Research magazine at Harvard University for especially imaginative scientific achievements. Dr. Sonal Saraiya and her team at the Detroit Medical Center decided to try the folk remedy as a “last resort” after failed…

Original post from Conversations: Find A Cure Magazine written by Douglas Lowell Conversations: Aidana, hi. Thanks for speaking with CONVERSATIONS today. Tell us about Glanzmann Thrombasthenia (GT))? What type of disease is this? How old were you when you were diagnosed? Aidana: Hello! Glanzmann Thrombasthenia (GT) is a rare blood disorder. The platelet count in…

Originally Published on AugustaChronicle.com July 31, 2010 Helen Smith could feel that the baby was wet as she picked her up in the dark bedroom and carried her to the bathroom. It wasn’t until she turned on the light that she saw the blood. “It was blood, everywhere,” Smith said. “She had just nicked her…