Latest news with #OsteogenesisImperfecta
Cision Canada
19-06-2025
- Health
- Cision Canada
Second Annual Charity Golf Tournament Raises $100,000 for the Canadian Osteogenesis Imperfecta Society (COIS), Honouring the Legacy of Dr. Francis Glorieux Français
TORONTO, June 19, 2025 /CNW/ - The Second Annual COIS Charity Golf Tournament, held on June 3, 2025, at Glen Abbey Golf Club in Oakville, raised an impressive $100,000 in support of the Francis Glorieux Research Fellowship. This fund, established by the Canadian Osteogenesis Imperfecta Society (COIS), furthers the pioneering work of Dr. Glorieux, whose groundbreaking research transformed the lives of individuals living with Osteogenesis Imperfecta (OI), a rare genetic disorder also known as Brittle Bone Disease. The inspiration for this tournament began last year, when Jacinta Whyte marked her 50th anniversary in the insurance industry not with personal fanfare, but with purpose. As President and Chair of COIS, and Deputy Group Chief Executive of Ecclesiastical Insurance Group, Whyte spearheaded the inaugural fundraising event in honour of a cause that touched her life deeply: the treatment and advocacy for people living with OI, including her daughter Rachel—one of Dr. Glorieux's earliest patients. Children born with OI face a lifetime of challenges, including bone deformities, short stature, and frequent fractures. For families around the world, Dr. Glorieux's work has brought new hope. His treatment, pioneered at the Shriners Hospital in Montreal and adopted internationally, has dramatically improved outcomes and quality of life for countless individuals. One of the most touching moments at the tournament was a video message from Sophia, the COIS Junior Ambassador living with Type 3 OI. "My name is Sophia. I am a Junior Ambassador for COIS, and I have Type 3 OI. I'm sorry I can't be with you in person—I am going to my Artistic Swimming Party! Thank you to Dr. Glorieux and the Shriners team for allowing kids like me to take part in the activities we love. I hope the next generation of researchers follows in your footsteps." Dr. Angela Cheung, UHN award-winning researcher and professor at the Temerty Faculty of Medicine, University of Toronto, introduced the two inaugural Francis Glorieux Fellowship recipients who briefly described the research that the Fellowship supports: Dr. Joseph Petruccelli, a physician-scientist, currently conducts research at Shriners Hospitals for Children in Canada. "My research," he explained, "focuses on developing predictive tools to optimize surgical care in children with Osteogenesis Imperfecta (OI). By combining 3D reconstruction of X-rays with machine learning algorithms, my goal is to improve outcomes, reduce complications, and extend the lifespan of surgical implants in growing children. Dr. Ezgi Aydin, Hospital for Special Surgery, NYC, is recognized for her work investigating the contribution of skeletal stem cells in fracture healing and nonunion. Her work is dedicated to uncovering the molecular mechanisms underlying impaired bone repair. Dr. Aydin described her research via video from NY. "Using a novel mouse model, my research looks to uncover the mechanisms driving abnormal muscle function and defective bone repair in OI." Kristin Hayes, COIS Ambassador and Board Member, welcomed the opportunity to address attendees and express her gratitude to Whyte: "Jacinta has been the driving force behind COIS. Without her, I don't believe we would be a registered charity, or able to support families the way we do. She takes on whatever needs to be done to fulfill our mission–– to provide support, education, and hope to families affected by OI in Canada and around the world." As the tournament came to a close, Whyte tearfully shared sad news: "We are heartbroken by the loss of Dr. Francis Glorieux, who passed away yesterday. Our thoughts and prayers are with his wonderful family who so generously shared him with us. Francis was not only an extraordinary doctor, but also an extraordinary man. His compassion, kindness, and friendship touched all of us who had the privilege of knowing him." Whyte expressed heartfelt gratitude to the many friends, sponsors, colleagues, business partners and COIS families who came together for a day of sport, community, and shared purpose, and whose generosity helped raise another $100,000. "Thanks to your unwavering support of the COIS Education Fund," she said, "we will invite new applications for the Francis Glorieux Research Fellowship. This fellowship not only honours Dr. Glorieux's extraordinary legacy but also fuels the next generation of researchers who will carry his life's work forward—bringing hope, discovery, and progress to those living with Osteogenesis Imperfecta."
Time of India
21-04-2025
- Health
- Time of India
Rare feat: City hospital performs kidney stone removal surgery on woman with brittle bone
Lucknow: A 36-year-old woman battling the rare genetic disorder Osteogenesis Imperfecta (OI), often referred to as 'brittle bone disease', successfully underwent a complex kidney stone removal surgery through a minimally invasive procedure at Max Super Speciality Hospital , Lucknow. The patient, Stuti, was suffering from a rare genetic disorder that makes bones extremely fragile, and even the slightest movement could lead to fractures. Standing just three feet tall, Stuti's condition made conventional surgical methods extremely risky. The patient was admitted to the hospital with severe pain in her left side and difficulty in urination. Tests revealed multiple kidney stones in her right kidney. Her short stature, brittle bones, and restricted limb movement made standard surgical approaches unsuitable. Additionally, her condition caused bone debris to accumulate in the kidneys, further complicating the case. Dr. Adittya K Sharma, director, Urology, Max Hospital, said, "Treating a patient who has Osteogenesis Imperfecta requires more care due to fragile bones and spinal deformities. To safely access the kidney, doctors performed Endoscopic Combined Intrarenal Surgery (ECIRS), combining flexible ureteroscopy and a small back incision (Supine PCNL). This minimally invasive technique reduced bone pressure and significantly improved procedural safety." Following the procedure, Stuti was discharged in stable condition. Her recovery was smooth, with doctors monitoring her progress closely.
Yahoo
04-04-2025
- Health
- Yahoo
Medicaid made my brother's final weeks more peaceful
A sign displayed by U.S. Senate Democrats at a Washington, DC press conference on Feb. 19, 2025. (Photo by Shauneen Miranda/States Newsroom) As I sat in my oldest brother's room at Moses Cone Hospital in Greensboro, listening to the alarm shriek that his oxygen levels were critically low, I kept batting away intrusive thoughts about the federal budget battle happening hundreds of miles away in D.C. None of the Washington policymakers in their fancy suits could possibly understand the position my family was in, seeing Medicaid dollars go toward making my brother more comfortable in the last minutes of his life. Medicaid has been essential for multiple people in my family, but in particular my oldest brother. To call his health care needs complicated would be an understatement. He was born with Osteogenesis Imperfecta, also known as brittle bone disease. His birth parents originally thought he wouldn't survive due to fracturing most of his bones during the birthing process. But he survived and, due to numerous factors, his birth parents relinquished their parental rights. He was sent to live in a pediatric nursing home. My parents adopted him at the age of four, and he grew up receiving orthopedic care through the private insurance my father received through his job at UNC-Greensboro. In high school, his care grew more complicated as he was diagnosed with other physical, mental health, and developmental disabilities, and my parents tried to help him transition into adulthood. They wanted all their children to enjoy as much independence as possible, and my older brother was no exception. There was a lot of back and forth on where my brother would live as an adult. Eventually, it was decided he could be most independent at an assisted living facility. And for a while, that seemed to work out. However, after a year at the facility, he had multiple major medical issues, physical and mental, that threw that decision into question. My parents gained medical guardianship over him and were able to obtain a Medicaid waiver that allowed him to live in the community with a care attendant. And while his medical situation remained difficult over the years, we always knew we could count on Medicaid to help provide the care he needed to remain as independent as possible. It felt ironic to see congressional Republicans once again jeopardize Medicaid at the same time that my brother was on a ventilator fighting for his life. Because of Medicaid, our choices surrounding my brother's emergency hospitalization and end-of-life comfort care were not hampered by concerns around expenses. Without Medicaid, our experience would have been much more difficult. Almost three million North Carolinians are covered under Medicaid, with a 2023 expansion allowing an additional 470,000 people to be covered in the first seven months. The state spent $27.8 billion to provide critical healthcare to those who needed it under Medicaid last year and received $18.9 billion from the federal government. After my brother's passing, I think about those still receiving life-saving care through Medicaid. It's outrageous to think congressional Republicans want to line millionaires' pockets with money that's helped North Carolinians like my brother receive life-sustaining care, including two million people who live in districts governed by the same elected officials who are pushing for these cuts. As the disability community continues to grow, it's imperative that Congress refrain from these harmful efforts to cut or limit benefits via burdensome proof of work, block grants, or lifetime caps. All the suggestions congressional Republicans have made to 'reduce costs' through Medicaid will leave more disabled people dead, homeless, or institutionalized. Shame on them.
